Autism
15 Things You Should Never Say To An Autistic
Suicide risk in autism
Talk
with your kids about autism 7 Characteristics typical of Autism 1. Different sensory experiences. For example, heightened sensitivity to light, hearing loud sounds as soft and soft sounds as loud. 2. Non-standard ways of learning and approaching problem solving. For example, learning “difficult” tasks (e.g. calculus) before “simple” tasks (e.g. addition) 3. Deeply focused thinking and passionate interests in specific subjects. “Narrow but deep,” these “special interests” could be anything from mathematics to ballet, from doorknobs to physics, and from politics to bits of shiny paper. 4. Atypical, sometimes repetitive, movement. This includes “stereotyped” and “self-stimulatory” behavior such as rocking or flapping, and also the difficulties with motor skills and motor planning. 5. Need for consistency, routine, and order. People on the autistic spectrum may take great pleasure in organizing and arranging items. 6. Difficulties in understanding and expressing language as used in typical communication, both verbal and nonverbal. For example, difficulty understanding jokes or sarcasm. 7. Difficulties in understanding and expressing typical social interaction. For example, preferring parallel interaction, having delayed responses to social stimulus, or behaving in an “inappropriate” manner to the norms of a given social context (for example, not saying “hi” immediately after another person says “hi”). 5 tips for making friends with an Autistic person. Now that you know more about autism, the following tips should help your child be a more inclusive classmate and friend. 1. Get to know them by finding out their interests. You might be surprised about what they like! 2. Choose a quiet place to share common interests. The library is a great place to hang out if you’re autistic! 3. Invite them to play a game and make sure the rules are clear. Many Autistic people prefer to follow rules. 4. Draw pictures to help each other understand conversations better. Some Autistic people think in pictures and have more difficulty with words. 5. Help them if you see they’re struggling. Sometimes it’s really stressful being Autistic. If you see your friend getting upset. ask them if they need anything. The most important thing to remember is that all children should continue learn how to be a better classmate, peer, and friend. Autistic Self Advocacy Network autisticadvocacy.org Is Autism a Mental
Illness? This debate has surfaced many times before and in many venues. It is a difficult one to resolve because there really is no scientific basis on which to separate a psychiatric disorder from a neurological or developmental one. Certainly there are some things that feel different when considering autism, especially in its more severe forms, relative to things like depression or anxiety. The development of autism seems less dependent on environmental factors than something like PTSD, for example. It also is generally present at a very early age. For many, autism just seems more intrinsically “biological” than many other conditions. With closer scrutiny, however, it is easy to find holes in these distinctions. As science progresses, the neurobiological basis, or at least substrate, of many other psychiatric conditions is increasingly appreciated. And even though there seems something quite medical about autism, we still have been unsuccessful in identifying the specific processes in the brain that underlie the condition, similar to more classic psychiatric disorders. Unlike diagnoses such as bipolar disorder and schizophrenia, the physicians who specialize in assessing and treating autism are more wide ranging and include behavioral pediatricians, neurologists, and psychiatrists with no single specialty “claiming” this particular condition. This, of course, is in addition to the many non-physicians (psychologists, speech pathologists, occupational therapists, special education teachers, etc.) that often provide the bulk of care. Autism treatment definitely works best as a team approach. At the same time, it is probably true that the largest number of patient visits with a specialist physician for autism come from psychiatrists. Furthermore, the only medications with FDA approval in autism are psychiatric medications, although these are used to address irritability and aggression and not the core autistic features. Yet despite these facts and the lack of any solid basis on which to divide various diagnoses into tidy categories, many autism advocates have worked hard to frame it as a developmental or neurological disorder rather than a psychiatric one. In a classic “be careful what you wish for” moment, they were successful enough to convince some insurance companies not to cover patient visits with psychiatrists that were related solely to autism, leaving some families scrambling to get the care they need. Autism Speaks currently seems to be trying to avoid this quagmire by now calling autism “a group of complex disorders of brain development.” Such a description is true enough, but the statement seems just as valid for a variety of other diagnoses such as ADHD or even Bipolar Disorder. The motivation behind the push to label autism as something other than a psychiatric disorder, in my view, comes much more from fears of stigma than any scientific principle. Unfortunately, however, one unintended consequence of the push to move certain conditions out of the mental illness category is increased stigmatization for those that remain there. “We are not you,” is the not so subtle message being sent. I guess my main point here is that if someone wants to label more extreme and less typical behavior as psychological or neurological or developmental (or as no disorder at all) then that's their interpretation. However, what is neither scientifically supported nor constructive is to parse out us versus them or you’re ill and I’m not groups that promote further division and stigma. We need to appreciate fully how words like psychiatric, neurological, and developmental are really our own arbitrary creations that the human brain doesn’t recognize or respect. From there, I wonder if it might be best just to leave terms like “mental illness” behind for everyone in favor of more encompassing labels that don’t carry the same history or baggage. Maybe something like “complex brain disorders” would work? That way, we can move beyond this weary debate and work to speak in a unified voice for adequate resources and rights for all people who struggle with cognitive-emotional-behavioral challenges, whatever we decide to call them. For more reading on a related topic, please see my earlier post, What If We All Got Mentally Sometimes? David Rettew is author of Child Temperament: New Thinking About the Boundary Between Traits and Illness and a child psychiatrist in the psychiatry and pediatrics departments at the University of Vermont College of Medicine. Follow him at @PediPsych and like
PediPsych on Facebook. Dear Abby: Is
Autism a Mental Illness? Jeanne Phillips, writing under the pen name Abigail van Buren, quotes a Mayo Clinic doctor to the effect that autism “affects behavior, cognitive ability and social skills” and notes that the syndrome appears as a diagnosis in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders. That list would seem to argue for the label Dear Abby had applied initially, mental health disorder. No, Phillips now says. Autism is a “neurodevelopmental disorder.” But aren’t many mental illnesses neurodevelopmental disorders? Conditions that first appear in childhood are especially likely to fit that description. Think of pervasive developmental disorder or early-onset schizophrenia. Those conditions stand at the core of child psychiatry — and they are likely to require the services that, within medicine, the mental health professions provide. The same is true for autism. The primary treatments are behavioral and psychological; where medications play a role, they tend to be the ones that psychiatrists prescribe. Much of the finest research on autism was performed by psychiatrists, such as my beloved teacher, the late Donald J. Cohen. His work serves as a model of integration, using the research methods of genetics and neuroscience and the therapeutic techniques of psychopharmacology, behaviorism, teacher training, and, yes, psychoanalysis, in a wiser mode. Some of the impetus for the reclassifying autism is to spare affected families shame, that is, the shame of having raised a child with mental illness. This reaction is understandable, given the history of autism in psychiatry, and particularly in psychoanalysis where the condition was once attributed to bad parenting. Autism can be heartbreaking for parents; certainly it is a neurodevelopmental disorder, and if that's what families prefer to call it, we should probably all join in. But then, the question arises, what is autism being distanced from? What do we make of families whose children suffer obsessive-compulsive disorder, Tourette syndrome, and the rest? We might note that autism overlaps substantially with those very diseases. So, yes, it is easy to see why
families whose members are afflicted by autism might hope to
recategorize the condition. But, Dear Abby, might you have
replied that today an alternative and arguably yet more
humane response would consist in embracing the “mental
illness” label — and insisting that that
isn’t shameful? What Is It? Autism affects about 1 out of 1000
children, from all racial, ethnic, and social backgrounds.
It is 3 to 4 times more prevalent in boys than in girls. Symptoms Some typical behaviors associated with autism include: Disordered play — An autistic toddler usually ignores other children and prefers to play alone. The child may spend hours repeatedly laying out objects in lines, sitting silently in an apparent trance-like state, concentrating on only one object or topic (and any attempt to divert the child can provoke an emotional outburst). Also, young children with autism are typically unable to engage in make-believe play. Disordered speech — An autistic child may speak infrequently or remain totally silent. When the child does speak, the words may be an echo of what another person said. Speech patterns may be different. Instead of saying, "I want a sandwich," the child may ask, "Do you want a sandwich?" Repetitive behaviors — The autistic child may engage in repetitive behavior such as saying the same phrase over and over again or repeating a particular motion, such as clapping, finger-snapping, rocking, swaying and hand-flapping are also common. Abnormal behaviors —
Children with autism may develop obsessive routines. Some
may also become hyperactive, aggressive, destructive or
impulsive. Others may intentionally injure themselves. What it's like to
walk down a street when you have autism or an ASD I didn't manage to get the brightness perfect its too bright at the end. the brightness should be more like the start of the autism walk part its seemed to get too bright at the end for some reason. The first part is a neurotypical walking down a city street then what an autistic or asd person will see and hear when they walk down the same street. It will hopefully give neurotypicals a rough idea about what it's like to life with autism or an ASD. it impossible to get it perfectly correct but i've tried to recreate the experience as closely as possible. Parts of the video are too bright and parts are about right but i'm not amazing at video editing so i've tried my best with what knowledge i have. It does vary from person to person
with autism but this is a simulation of how I personally
experience the world. Unmistakable Signs of Autism in a Young Child
Diagnosis Expected
Duration Prevention Treatment Education — Educators will develop an individualized education program to address the child's specific educational problems. This typically includes speech and language therapy. Behavioral management — Behavior modification strategies include positive reinforcement (rewarding "good" behavior) and "time-outs." The goal is to enhance appropriate behavior and reduce inappropriate behaviors (such as self-inflicted injuries). Medications — No single
drug has been able to treat all symptoms of autism
effectively. In some children, antipsychotic medications
(such as thioridazine, chlorpromazine, mesoridazine,
haloperidol) may reduce some symptoms associated with
autism, such as aggression, irritability and repetitive
behavior, but these medications may also have side effects.
Medications such as fluoxetine (Prozac) and clomipramine
(Anafranil) may reduce repetitive actions and other
anxiety-related behavior. Methylphenidate may be used to
treat hyperactive or impulsive behavior. When To Call A
Professional Prognosis Life expectancy depends on the
presence of other conditions (such as epilepsy), as well as
the overall general health of the autistic individual. Additional
Info: Autism Society of America, 7910 Woodmont Ave.,
Suite 300, Bethesda, MD 20814, 800.328.8476 or
www.autism-society.org
15 Things You
Should Never Say To An Autistic Edit 17 Apr. 2012: After receiving a slice of humble pie over the anonymity of the internet for language that was interpreted as cissexist, binarist, and inaccurate, I've revised the language in number 13. Note: I use identity-first language (i.e. "autistic person") and not the politically correct person-first (i.e. "person with autism") because I'm not a person with Asianness or a person with womanliness. Calling me an Asian or woman doesn't mean I'm not a person and neither does calling me an Autistic. There could really be a hundred or a thousand of these, but I've decided to choose just fifteen for the sake of brevity and not imploding anyone's browser. All of these things have actually been said to Autistics, children and adults, and some of them are unfortunately very common. Some happen more often over the internet, and some happen more often in person, but they're all phrases or questions that can be incredibly hurtful. Sometimes people who say these things are well-meaning, which can make the impact even worse. Especially in those cases, people might not understand why these can be so offensive and hurtful, and occasionally insist that what they're saying is a compliment, even when it's not. 1. "So is that like being retarded?" Factually speaking, Autistic people in many cases do not have an intellectual or cognitive disability, and many people with intellectual or cognitive disabilities are not also Autistic. There are some Autistic people who also have an intellectual or cognitive disability. Nevertheless, the word "retarded" is often very hurtful for Autistic people, as it is frequently used as an insult to dehumanize people with developmental and intellectual disabilities. The r-word is often used to express hatred for people with disabilities. Please don't use it. 2. "You should be very proud of yourself. You seem so normal. I couldn't tell that you're Autistic." While this is rarely said to Autistic people whose disability is very visible, it is very frequently said to Autistic people with much more invisible disability. It's insulting because it suggests that because the person doesn't appear to be disabled or doesn't fit preconceptions of what Autistic people are supposed to sound or act like, that person must therefore not have a disability or be Autistic. It also suggests that "normal" is the standard to which anyone should aspire to appear or act (and that "normalization" should be the ultimate goal of therapies or treatments for autism rather than pragmatic coping skills to navigate a world where Autistics are a minority), and therefore that it's not good to act or speak in ways commonly associated with being Autistic, even if those behaviors don't actually hurt anyone. This is very dismissive of a person's disability and experiences. 3. "You must be very high-functioning." Many Autistic adults take issue with the "high-functioning" and "low-functioning" labels for a variety of reasons. Some people have received both labels but at different times in their lives, and many Autistics have very uneven skill levels -- some people who might be able to articulate their ideas very well at a conference may be unable to travel alone or cook for themselves, while some people who are unable to communicate with oral speech might be able to live independently. That debate aside, this is also very dismissive of a person's individual experiences with disability. Unless you know someone very, very well, you have no way of knowing what specific adaptive functioning skills or life skills a person has or what his or her needs and challenges might be, and it's not possible to acquire that information simply by looking at a person. 4. "You're not like my child; you can write a blog post. My child will never be able to write a blog post." Not everyone who can write a blog post can live independently, tend to their own activities of daily life, get and keep a job, complete higher education, travel alone, communicate with oral speech, or manage their own finances. The ability to write a blog post says absolutely nothing about a person's needs and challenges, and how disability might affect an individual person. There are people like Amy Sequenzia, Larry Bissonnette, Amanda Baggs, Tracy Thresher, Hope Block, Sue Rubin, and Carly Fleischmann, all of whom are non-speaking Autistics or people with autism who have given presentations at conferences, written blog posts, written letters to the editor, published articles in newsletters or journals, and visited legislators. Other people, like Kassiane Sibley and Kathryn Bjørnstad, who are frequently touted as "high-functioning" because of their blogs, do not have consistent adaptive functioning abilities. 5. "I know a kid whose autism is really severe. You don't seem like him." Every Autistic person is different from every other Autistic person. Among Autistics, there is a huge range in individual abilities, skills, needs, and challenges. It is impossible to know what an Autistic's abilities and skills versus needs and challenges after a brief conversation either in person or in the comments thread of an internet post. What makes Autistic people a group united by a shared diagnosis are the commonalities of all Autistic people. All Autistic people share some of the same core characteristics that define autism -- key differences in neurological functioning, sensory and cognitive processing, and communication abilities that often manifest as disability. If an Autistic person was diagnosed by a qualified clinician familiar with autism, that person is Autistic, regardless of whether they look, speak, or act like another Autistic person. 6. "Can you have sex?" Yes, Autistic people can have sex. Some get married and have children. Some have Autistic children. Other Autistic people are never taught about sex, for a variety of reasons. Autistic people, like all people with developmental disabilities, are at much higher risk for abuse or victimization -- sexual or otherwise -- than the general population, but that doesn't mean that Autistic people don't know about or can't have sex. 7. "Does that mean you're really good at math/computers/numbers?" If there's one thing that's sure to offend an Autistic, it's seeing him or her in terms of common stereotypes about autism. A very small minority of Autistics are also savants. Many Autistics have higher than average measured IQ, and many Autistics have measured IQ that falls right into the median, while still others have an intellectual or cognitive disability. Some Autistics have dyscalculia or similar learning disabilities, and actually find math to be extremely difficult. Other Autistics, including those who might be good at math, simply don't like it. And yes, some Autistics happen to be excellent with math and enjoy working or studying in related fields. There are Autistics who are relatively computer illiterate as well as Autistics who thrive in the IT world and community. Asking if we like math, computers, or numbers because we're Autistic is like asking a Black or African American if he or she likes watermelons or rap music because he or she is Black or African American. 8. "But you're married/have a job/go to college. You couldn't do that if you were really Autistic." Yes, it's true that every Autistic isn't going to get married, have a job, or go to college. But plenty of Autistics do get married, have jobs, or go to college. This statement is insulting because it's ableist. (For those who may not regularly read my blog, ableism is like racism, ageism, or sexism, but directed toward people with disabilities.) While not every Autistic person may be able to do all or some of these things, it's very ableist to assume that no Autistic person can or that anyone who can must not be Autistic. 9. "Do you take any medications for that?" This is a very personal decision. Some Autistic people take medications for various reasons, and some do not take any medications. You wouldn't ask a stranger if he or she was on medication for anything, so you shouldn't ask an Autistic person whom you don't know very well if he or she takes medications either. This is very rude to ask someone, especially someone whom you do not know well. The only context in which such personal questions are appropriate with strangers or acquaintances might be during a conference or panel presentation where the Autistic speaker is specifically speaking about his or her experiences. 10. "You have no right to claim to speak for severely Autistic people who can't speak for themselves." Firstly, any non-speaking Autistics can speak for themselves. People like Amy Sequenzia, Larry Bissonnette, Amanda Baggs, Tracy Thresher, Hope Block, Sue Rubin, and Carly Fleischmann are all non-speaking and they can speak quite capably for themselves. Secondly, while every Autistic person has different abilities and needs, that does not mean that Autistic people who may present as highly verbal or invisibly disabled cannot speak to the commonalities that they have with Autistic people who do not present the same way as themselves. Furthermore, any Autistic person will understand another Autistic person's experiences far better than any non-Autistic person by nature of also being Autistic. That doesn't mean that I should be advocating for your child in his or her school (unless you ask me to do that, it's not my place), or that I know your child's particular quirks or personality, because unless I actually spend time with your child, I don't and won't. It does mean that I share the way your child experiences the world, and can speak to that. 11. "Can you please not flap/rock/spin/jump in public? It's embarrassing." Flapping, rocking, spinning, jumping, or other stimming (calming behaviors), in the vast majority of cases, hurts neither the person doing it nor anyone else nearby. There's nothing wrong with stimming, and this statement communicates that the Autistic person should stop acting like him or herself or stop moving in ways that come naturally and instinctively. This is like asking a Christian who likes to wear cross jewelry to please not wear a cross necklace in public, or asking a Latino or Hispanic from an hispanohablante country to please not speak Spanish while in public. It's very offensive, and for some people, could be very triggering (psychologically and emotionally traumatic). 12. "You mean you are a person with autism. You are a person first, not a disability or a disorder label." Some people on the autism spectrum do prefer to be called people with autism, and if talking to someone who does, you should call him or her a person with autism. Many of us, however, prefer to be called Autistic or Autistic people, and if you are talking to someone who prefers to be called Autistic, you should also respect his or her preferences in referring to him or herself, and call that person Autistic. Everyone has the right to decide how they would like to be described, and you should respect that right. 13. "What's it like to be Autistic?" Just as it would be improper, rude, and demeaning for someone to ask me what it is like to be Asian, it is improper, rude, and demeaning to ask people belonging to any marginalized group what it is like to be the way that they are. You shouldn't ask someone whom you don't know well what it's like to be Autistic outside the context of a conference or panel presentation about that person's experiences--in which case, more specific questions might actually be better and more effective--and if the person is someone whom you know well, you still should refrain from any variation on this question if the person has made it clear that the topic is an uncomfortable or off-limits one. Besides, every Autistic person's experiences vary so much that it'd be an injustice to all of us for you to ask a question that implies that there's one way to experience being Autistic. While we share certain characteristics and experiences of the world, our life stories and our experiences with people and ableism are vastly different. 14. "Have you ever heard of Temple Grandin? Her books are really amazing!" The answer is almost always yes. But it gets very tiresome for Autistic people to constantly hear about Temple Grandin day in and day out. There are many prominent Autistic people in diverse fields and known for a variety of accomplishments, and it's very annoying to be constantly compared to the one same person all the time. 15. (Asking a question about the Autistic person to a parent, support person, aide, sibling, or friend who is standing or sitting beside the Autistic person ) Please don't talk about us as if we're
not in the room when we're sitting or standing right here.
Just don't. The message that that communicates to us is that
we don't matter and can't possibly have anything meaningful
to communicate. What not to say
to a parent of an autistic child 1. “He can’t be autistic because…” I heard a million reasons why Casey couldn’t be autistic when we were in the process of getting him diagnosed. They ranged from “He just looked me in the eyes!” to “He’s nothing like Rainman!” Parents have a hard enough time coming to terms with their child’s diagnosis all on their own. We spend months saying those very same things to ourselves. Then we get to a point where we know that what we are doing is right and seek out help. Having to constantly defend what we are seeing is taxing during a time where we don’t have much left to give. Autism comes in all shapes in sizes. It’s a spectrum of abilities and disabilities. It’s never the same in two children with the same diagnosis. Instead, say: “I’m new to autism; can you tell me more about it? What’s Casey’s autism like for him?” I love when people ask questions. It means that they are stepping outside of the stereotypes they know and are really wondering what autism means to us. It means they care and they want to learn more about my son. I don’t expect everyone to be an expert on every diagnosis out there. What I needed most was for people to just be there for me. After Casey was diagnosed, one of the greatest things said to me was, “He’s still the same kid he was the day before he was diagnosed.” 2. “He’ll probably grow out of it.” It’s been seven years since my son was diagnosed. He has not and will not grow out of it. He was born this way and his autism is a huge part of who he is and what makes him amazing. He has achieved so much through his hard work and through the talents of many amazing teachers and therapists, and he will continue to be autistic. Saying he’ll grow out of it discounts the hard work he has or will do. It also discounts the many good things his autism adds to who he is. I want people to accept Casey for who he is, autism and all. I love it when people accept his quirks and even embrace them. My friend Erin has always done this. For a while after we first met, Casey would greet her by running headfirst into her. So she would turn around and do the same thing to him. It made him giggle uncontrollably. I love it when people embrace him. I love being asked what Casey likes. I love it even more when people ask him what he likes. Anyone who is around Casey for longer than ten minutes ends up loving him for who he is, and that’s not in spite of or because of his autism. It’s because he’s a great kid. 3. “I read that autism is caused by…” Please. Please don’t tell me that you’ve found yet another study that says it’s the mom’s fault. Please don’t post it to my Facebook wall that my being a little overweight or my living by a highway caused my son’s autism. I feel enough damn mommy guilt as it is. There is a new “study” published every week. I’m a fan of good research. The problem with these studies is that they are correlational. Correlation between two things does not mean that one caused the other, as is erroneously implied. More and more, the cause of autism looking to be all genetic. But, if you’re slightly masochistic or just enjoy a good argument, mention either side of the vaccine debate. See how that goes. 4. “I heard that you can cure autism by…” Oh, you are stepping into a minefield with that one. This has to do a lot with number three, above. We don’t know for sure the cause, and there is no cure. In fact, using the word “cure” in conjunction with autism pisses A LOT of adults with autism off. They like who they are, autism included, and do not want to be cured of something that makes them who they are. Beyond that, there are too many shady doctors out there peddling snake oil treatments at an obscene cost. The “treatments” range from the benign waste of money to just downright dangerous. You can find everything from bleach enemas (I kid you not, ask Jenny McCarthy!), hyperbaric oxygen chambers, chelation, to funky saunas (You know, because people with autism love being enclosed in small, dark and hot rooms). Too many times people, whether they be celebrities who think they are doctors or doctors who care too much about being a celebrity, act as if you’re not doing everything they are doing, buying every one of their expensive and unproven treatments, you are not a “warrior mom” and you’re not trying hard enough for your child. I’m sorry, that’s bullshit. Most parents go to great lengths to treat their child’s autism and to give them the best chance at being their best selves. My son has had speech, occupational and physical therapy since he was 18 months old. We tried alternative diets, but they didn’t work out for my son. These were never in an attempt to “cure” him, but to help him have the best chance at success, however that comes to him. I’m always grateful that people are paying attention to autism related stories. It’s really nice that people care enough to want to have a dialogue about autism. I’d much rather have you say though, “Do you have any favorite books about autism? Where do you go for your information?” This is so much better than inadvertently making us feel like we caused our child’s autism and now aren’t doing enough to cure it. (On a personal note, if you say to me that “Jenny McCarthy cured her son, why haven’t you?” You’re likely to get punched in the throat. ) 5. “You’re my hero!” “God knew you could handle this!” “Special kids for special parents” and other such platitudes. I swear there will come a day that I roll my eyes too hard at one of these that they’ll get stuck inside my head. I get that you’re trying to be nice. I get that you think you couldn’t do what I do. I know you want to think that there’s something amazing about me that gives me the ability to handle having a child (or two) with disabilities. But there is nothing fundamentally different about me than any other mother. I am a normal mother in an abnormal situation. I do what I do because I have to, and you would too if you were put into the same situation. I cannot emphasize this enough: special needs kids aren’t sent to special parents. Some parents are amazing without even having a kid with special needs! Some parents just plain suck, and some of those do in fact have kids with disabilities. I am not some sort of hero. I have not been endowed on high with some sort of powers that make me any better at parenting two children with special needs than you would be if you were in the same circumstance. Like with anything with parenting, you learn as you go. You make mistakes. You cry, scream, swear and start over the next day. Saying that I’m some sort of hero puts me on an impossible pedestal that I don’t even care to be on. I am a normal mom in an abnormal situation. What I need you to say is, “How can I help?” This is the not-so-secret secret very few parents of children with disabilities will tell you: we aren’t perfect. This is hard. We need help. We need a break. We need sleep. If nothing else, a very simple, “You’re doing a great job!” goes a long, long way. 6. “____________ ” Way worse than saying any of the items from the list above is saying nothing at all. Autism can be a very isolating disability, for both the person with autism and the family members. It makes getting out and doing family activities or sports very hard. Socially speaking, we are taught and subsequently teach our kids to not stare at and to ignore someone who may be behaving in a way that seems weird. Not surprisingly, teaching someone to ignore a person that behaves differently a lot, ends up leaving that person ignored completely. In writing this list, my greatest fear is that in telling you what not to say, it would make you afraid to say anything at all. That is the last thing I want from this. Most parents of children with disabilities are perfectly comfortable talking about our kids. We are every bit as proud of them and their accomplishments as you are of your children. Talk to us. Ask us questions. There is nothing you can say if you are well-meaning that could ever be worse than saying nothing at all. About the Author... Lexi Sweatpants is a writer, wife and
mother of four. Her middle son has autism, her daughter has
Down syndrome. She has sleep deprivation and a deep passion
for candy. She writes about all of this and more at
Lexistential. A Mother Shares
What to Say and What Not to Say to an Autism Parent We know they mean well. Or at least we hope they do. All of the family, friends, co-workers and even strangers who approach parents of children on the autism spectrum with words that really should never have left their mouths in the first place. Words that often unintentionally hurt or upset family members who are affected by autism. So, in the spirit of National Autism Awareness Month, some of my friends and clients who have children on the autism spectrum decided to brainstorm a list of statements they wish people would and wouldn’t say. 1. Don’t say: “Is your child an artistic or musical genius? What special gifts does your child have?” We’ve all seen “Rain Man” and know about the extraordinary artistic and musical gifts that some individuals on the autism spectrum possess. But the truth is that most on the spectrum do not have these gifts. In fact, only about 10 percent have savant qualities. Do say: “How is your child doing?” This is what you’d say to the parent of a typical child, right? It’s perfectly acceptable to say this to the parent of a child on the spectrum. They can share with you what’s going on in terms of their child’s treatment and/or educational experience. 2. Don’t say: “You’d never know by looking at her that she has autism! She looks so normal.” While the speaker might view this as a compliment, most parents of a child on the spectrum would not take it as such. Additionally, in the world of autism, the world “normal” is usually replaced with “typical” or “neuro-typical.” Do say: “Your daughter is adorable” Or offer any other compliment that you would use with any typical child. 3. Don’t say: “God doesn’t give you what you can’t handle” or “Everything happens for the best.” Please don’t use clichés. Unless you’re the parents of a child on the spectrum, you don’t really know just how much there is to handle. Statements like these seem to minimize a parent’s experience by implying that this situation is something that they should be able to handle. Also, while it’s tempting to try to put a positive spin on the diagnosis, most parents of newly diagnosed children don’t feel that the diagnosis is the “best.” Over time, parents come to a place of acceptance, and some even view the diagnosis as a gift or as a way to gain a different perspective on life. But don’t be the one to instruct them about coming to those terms. Do say: “Is there anything I can do to help you out?” or“I’m here if you need to talk.” You can offer practical solutions to help a parent handle the diagnosis or the ongoing tasks, like help with grocery shopping, babysitting or other daily responsibilities. Sometimes, parents just need to vent and it’s helpful to have a friend with whom to share their feelings. 4. Don’t say: “I know exactly what you’re going through. My cousin has a friend whose neighbor’s sister has a child with autism.” It’s human nature to try to show empathy for the family affected by autism, but it’s not right to say that you know “exactly” what parents are going through if you don’t have a child with autism. Do say: “I don’t know what you’re going through, but I’m willing to listen if you need to talk.” By honestly acknowledging the gap in your knowledge and offering heartfelt help, you will be a much better support system for the parents of a child on the spectrum. There are also wonderful resources and organizations that can help educate you about autism. 5. Don’t say: “Do you have other children and are they autistic, too?” While research shows there is a higher than typical incidence of autism among younger siblings of children with autism, it’s still not appropriate to ask this question. Also, it’s more acceptable to refer to children on the spectrum as “children with autism” rather than “autistic children.” When a child has leukemia, we say the child has cancer, not that the child is cancerous. To many parents, saying a child is autistic defines them only by their autism. Do say: “Do you have other children?” Just as you would ask this of parents of a typical child, this is a perfectly acceptable question for a parent of a child on the spectrum. 6. Don’t say: “Why don’t you just try…that new special diet I saw on TV? Or the latest and greatest treatment that was featured in the newspaper? Please don’t offer unsolicited advice, especially if it’s in the form of a new-fangled or untested treatment for autism. Parents generally go into “research overload” as they try to sort through the myriad of treatments to determine what’s right for their child. Don’t make them defend their choices. Do say: “I’ve been doing some research on autism and if you’d like, I can share it with you.” The phrasing of this statement gives parents the option of whether or not they’d be open to hearing about what you’ve discovered. 7. Don’t say: “Don’t you think you’ve put him through enough treatment? Just let him grow out of it.” Or “Just accept him the way he is. Why use treatment to try to change him?” Children do not spontaneously recover from autism, nor do they “grow out of it.” Parents do accept their children with autism for who they are, but like parents of typical children, they want to give their children every opportunity they can, which often translates into intensive treatment regiments. Research shows the importance of intensive early intervention, and treatment/support usually continues over the lifetime of an individual on the spectrum. Do say: “What kind of treatment program are you using for your child?” or “What school does your child attend?” Be careful not to offer unsolicited advice about the treatments or educational choices that have been made, or be overly probing. Take your cues from the parents about how open they want to be about the specifics of their child’s treatment plan. 8. Don’t say: “It’s such a burden to have to drive my kids to soccer practice and ballet classes every day!”or “My kids are talking so much they’re driving me crazy!” Please don’t complain about all of the “normal” things that bother you as the parent of a typical child -- at least not in front of parents who have children on the spectrum. Most parents of children with autism dream about driving their kids to soccer or ballet, and parents of the 25 percent of non-verbal children on the spectrum dream about their children speaking one day. Be aware of and sensitive to their needs. Do say: “Can I offer to drive your child to speech therapy or physical therapy?” Parents appreciate the extra help when it comes to driving their children to appointments, especially if there are siblings at home who need care, or help at an appointment when a child is scared or fussy. 9. Don’t say: “You should really make time for yourself. You need to relax. Maybe schedule a massage?” Life can be incredibly overwhelming, especially during the months right after your child is diagnosed with autism. Usually, the first thing you want to hear is about everything that you need to know about autism, and the last thing you want to hear is that you should make time for a mani/pedi. Sometimes, as the parent of a child with autism, “me” time is just not realistic. Do say: “If ever you feel like you’d like to take some time for yourself, I’d be happy to help out.” Once parents adjust to living with a child on the spectrum and establish a new normal, then it’s okay to offer to take them out for fun, or to stay with their child so that they can go out. 10. Don’t say: “How’s the marriage going? I hear the divorce rate is 80 percent among parents of kids with autism.” You’d be surprised how many people like to quote this statistic. It’s false! Yes, parenting a child with autism can put additional stress on a marriage, but it seems that the divorce rate is similar among parents with or without autism in the family. Do say: “Can I offer to babysit so you and your spouse can go out to dinner?” Parents of newly diagnosed children find it challenging enough to navigate the new world of autism, let alone to find time to have a date night (or trust someone to take care of their child). I went to a benefit for an autism school where the most popular silent auction item was the one for a teacher who offered her babysitting services. 11. Don’t say: “What caused your child’s autism?” Speaking about the cause of a child’s autism is a particularly sensitive subject because there is no known single cause. There are many theories about the causes of autism, which include heredity, genetics and environmental factors. Do say: Nothing. Even if you have a burning desire to ask this question, please don’t. It is both highly controversial and emotionally-charged. Often parents experience guilt around the cause of their child’s autism, and you’d only be adding fuel to the fire. Here’s a final note to our friends, family and co-workers: Thank you. We sincerely appreciate your efforts to connect, and hope that you’ll continue to reach out. We really do want your support, and if we don’t always respond the way you wish we would, well…maybe you’ll make up a list for us? Karen Siff Exkorn is the author of
"The Autism Sourcebook: Everything You Need to Know About
Diagnosis, Treatment, Coping and Healing—From a Mother
Whose Child Recovered" and a board member of New York
Collaborates for Autism. 13 Ridiculous Things
Not Quite Appropriate to Say to an Autistic Child Facts about autism: • Autism is mostly a genetic disorder Autism can make things hard in a family. Husband and wife might fight a lot more than they used to. Siblings might feel slighted. Bullying can become a major issue to deal with. Stress can become the norm. The little things in life, however, will make one jump for joy and scream with glee. Parents with autistic children often need advice on how to:
What they do NOT need is silly, ignorant and downright derogatory comments. They do not need their children maligned or seen differently (with a negative light) from the rest. There are many myths about autism and many posts about what not to say to an autistic child's parents. But what about the autistic children themselves? What you shouldn't say to an autistic child: 1.Stranger coming up and saying "I have seen Rain Man". Wait, what? Not all children are like a blockbuster sensation... 2."Are you actually autistic or do you just have Asperger's Syndrome?" What are they thinking? Last I checked, Asperger's was most definitely on the spectrum and has now been absorbed into Autism Spectrum Disorder within the new DSM-V. 3."You must be very high functioning." I believe that is meant as a compliment, actually. This stranger needs to be educated on the fact that autistic children do not need to be very high-functioning to be smartest in their class. 4."Why are you doing that?" or "That looks so weird!" are probably some of the most ignorant statements autistic children hear. They feel like it, they enjoy it, they find it quite normal for themselves? Many reasons pop up which are exactly what a regular child would say. Everyone is different. People need to learn how to accept that. 5.Stranger pointing to a body language book and saying, "I think this book can really help you..." Seriously? Maybe the stranger does not realize that autistic individuals perceive faces and body language differently and might not notice certain subtle messages sent through non-verbal means. 6."You are autistic? I am so sorry! That makes me so sad." That statement leaves me flabbergasted, let alone an autistic child. I'm pretty sure I can think of quite a few obscene responses to this one. It is quite sad that the individual has no clue what autism is all about. Quite a few geniuses out there are actually autistic savants. Anyone from Beethoven to Einstein to Bill Gates is believed to be an autistic savant, and always for a reason. 7."But you look so normal." "I never would have guessed." "But there is nothing wrong with you." Last I checked, autistic children were not aliens. They look quite normal, mostly act like the average population and have few behavioral signs for the most part that gives away their disorder. So no, there is nothing wrong with them, simply something different. 8.Certain professionals staring at you with a fake smile and saying, "you cannot expect us to accommodate ALL of your needs." Wait, what? So you are allowed to pick and choose what needs you accommodate? I might need dim lights and few sensory distractions. My normal functioning friend might need a wheelchair to get into the building. Will you only accommodate one of us because that one has a physical disability? 9."You are autistic? Give me a hug, it is going to be okay..." and then, "what do you mean you do not want a hug?" First, you did not just find out I have cancer. Of course, I am okay. I was born with a disability or ability, depending on how you define it, that makes me stand out from the rest. That makes me special. Special people do not receive hugs from average people. Or maybe it is because I do not like hugs. Not everyone does, it is not just a trait reserved for autistic children. 10.Strangers mentioning a study they read that might or might not be true about the cause for autism. Parents might want to know what caused it and children might sequester themselves in libraries or in front of a computer searching for it, but hearing a stranger say it is like a slap in the face. No one knows what causes autism. There is no cure for autism. It is not fun hearing a stranger who is not your psychotherapist psychoanalyze your situation. 11.Strangers asking if you have tried this or that to cure the autism. Once again, there is no cure. There are only techniques one can use to lessen the meltdowns, help the children integrate into society and get a good night's sleep. Anyone but one's parents and therapists suggesting they try something new is generally unwelcome. Point is, what is being advised to do has probably already been tried ten times over. 12."Stop making excuses to be rude to people." Each case is different and they might not realize they are being rude in the first place. 13."But, you have a job!" Yes, autistic people can work. They may have a selected pool to choose from, wider or narrower depending on the individual, but they can create a career. Autistic children are just like the
average normal functioning child. They have feelings, they
like friends and they want to be loved just like anyone.
They may need certain accommodations, like weighted blankets
in school and at home, but to have autism simply means one
is different and not less; it is about time the world
learned to accept that simple fact. 15 Things You Should
Never Say To An Autistic
“I have a nephew that struggles the way you do” a woman once told Matthew when she learned he had autism, “How severe is your case?” There could really be a hundred or a thousand of these, but I’ve decided to choose just fifteen for the sake of brevity and not imploding anyone’s browser. All of these things have actually been said to Autistics, children and adults, and some of them are unfortunately very common. Some happen more often over the internet, and some happen more often in person, but they’re all phrases or questions that can be incredibly hurtful. Sometimes people who say these things are well-meaning, which can make the impact even worse. Especially in those cases, people might not understand why these can be so offensive and hurtful, and occasionally insist that what they’re saying is a compliment, even when it’s not. 1. “So is that like being retarded?” Factually speaking, Autistic people in many cases do not have an intellectual or cognitive disability, and many people with intellectual or cognitive disabilities are not also Autistic. There are some Autistic people who also have an intellectual or cognitive disability. Nevertheless, the word “retarded” is often very hurtful for Autistic people, as it is frequently used as an insult to dehumanize people with developmental and intellectual disabilities. The r-word is often used to express hatred for people with disabilities. Please don’t use it. 2. “You should be very proud of yourself. You seem so normal. I couldn’t tell that you’re Autistic.” While this is rarely said to Autistic people whose disability is very visible, it is very frequently said to Autistic people with much more invisible disability. It’s insulting because it suggests that because the person doesn’t appear to be disabled or doesn’t fit preconceptions of what Autistic people are supposed to sound or act like, that person must therefore not have a disability or be Autistic. It also suggests that “normal” is the standard to which anyone should aspire to appear or act (and that “normalization” should be the ultimate goal of therapies or treatments for autism rather than pragmatic coping skills to navigate a world where Autistics are a minority), and therefore that it’s not good to act or speak in ways commonly associated with being Autistic, even if those behaviors don’t actually hurt anyone. This is very dismissive of a person’s disability and experiences. 3. “You must be very high-functioning.” Many Autistic adults take issue with the “high-functioning” and “low-functioning” labels for a variety of reasons. Some people have received both labels but at different times in their lives, and many Autistics have very uneven skill levels — some people who might be able to articulate their ideas very well at a conference may be unable to travel alone or cook for themselves, while some people who are unable to communicate with oral speech might be able to live independently. That debate aside, this is also very dismissive of a person’s individual experiences with disability. Unless you know someone very, very well, you have no way of knowing what specific adaptive functioning skills or life skills a person has or what his or her needs and challenges might be, and it’s not possible to acquire that information simply by looking at a person. 4. “You’re not like my child; you can write a blog post. My child will never be able to write a blog post.” Not everyone who can write a blog post can live independently, tend to their own activities of daily life, get and keep a job, complete higher education, travel alone, communicate with oral speech, or manage their own finances. The ability to write a blog post says absolutely nothing about a person’s needs and challenges, and how disability might affect an individual person. There are people like Amy Sequenzia,Larry Bissonnette, Amanda Baggs, Tracy Thresher, Hope Block, Sue Rubin, and Carly Fleischmann, all of whom are non-speaking Autistics or people with autism who have given presentations at conferences, written blog posts, written letters to the editor, published articles in newsletters or journals, and visited legislators. Other people, like Kassiane Sibley and Kathryn Bjørnstad, who are frequently touted as “high-functioning” because of their blogs, do not have consistent adaptive functioning abilities. 5. “I know a kid whose autism is really severe. You don’t seem like him.” Every Autistic person is different from every other Autistic person. Among Autistics, there is a huge range in individual abilities, skills, needs, and challenges. It is impossible to know what an Autistic’s abilities and skills versus needs and challenges after a brief conversation either in person or in the comments thread of an internet post. What makes Autistic people a group united by a shared diagnosis are the commonalities of all Autistic people. All Autistic people share some of the same core characteristics that define autism — key differences in neurological functioning, sensory and cognitive processing, and communication abilities that often manifest as disability. If an Autistic person was diagnosed by a qualified clinician familiar with autism, that person is Autistic, regardless of whether they look, speak, or act like another Autistic person. 6. “Can you have sex?” Yes, Autistic people can have sex. Some get married and have children. Some have Autistic children. Other Autistic people are never taught about sex, for a variety of reasons. Autistic people, like all people with developmental disabilities, are at much higher risk for abuse or victimization — sexual or otherwise — than the general population, but that doesn’t mean that Autistic people don’t know about or can’t have sex. 7. “Does that mean you’re really good at math/computers/numbers?” If there’s one thing that’s sure to offend an Autistic, it’s seeing him or her in terms of common stereotypes about autism. A very small minority of Autistics are also savants. Many Autistics have higher than average measured IQ, and many Autistics have measured IQ that falls right into the median, while still others have an intellectual or cognitive disability. Some Autistics have dyscalculia or similar learning disabilities, and actually find math to be extremely difficult. Other Autistics, including those who might be good at math, simply don’t like it. And yes, some Autistics happen to be excellent with math and enjoy working or studying in related fields. There are Autistics who are relatively computer illiterate as well as Autistics who thrive in the IT world and community. Asking if we like math, computers, or numbers because we’re Autistic is like asking a Black or African American if he or she likes watermelons or rap music because he or she is Black or African American. 8. “But you’re married/have a job/go to college. You couldn’t do that if you were really Autistic.” Yes, it’s true that every Autistic isn’t going to get married, have a job, or go to college. But plenty of Autistics do get married, have jobs, or go to college. This statement is insulting because it’s ableist. (For those who may not regularly read my blog, ableism is like racism, ageism, or sexism, but directed toward people with disabilities.) While not every Autistic person may be able to do all or some of these things, it’s very ableist to assume that no Autistic person can or that anyone who can must not be Autistic. 9. “Do you take any medications for that?” This is a very personal decision. Some Autistic people take medications for various reasons, and some do not take any medications. You wouldn’t ask a stranger if he or she was on medication for anything, so you shouldn’t ask an Autistic person whom you don’t know very well if he or she takes medications either. This is very rude to ask someone, especially someone whom you do not know well. The only context in which such personal questions are appropriate with strangers or acquaintances might be during a conference or panel presentation where the Autistic speaker is specifically speaking about his or her experiences. 10. “You have no right to claim to speak for severely Autistic people who can’t speak for themselves.” Firstly, any non-speaking Autistics can speak for themselves. People like Amy Sequenzia, Larry Bissonnette, Amanda Baggs, Tracy Thresher, Hope Block, Sue Rubin, and Carly Fleischmann are all non-speaking and they can speak quite capably for themselves. Secondly, while every Autistic person has different abilities and needs, that does not mean that Autistic people who may present as highly verbal or invisibly disabled cannot speak to the commonalities that they have with Autistic people who do not present the same way as themselves. Furthermore, any Autistic person will understand another Autistic person’s experiences far better than any non-Autistic person by nature of also being Autistic. That doesn’t mean that I should be advocating for your child in his or her school (unless you ask me to do that, it’s not my place), or that I know your child’s particular quirks or personality, because unless I actually spend time with your child, I don’t and won’t. It does mean that I share the way your child experiences the world, and can speak to that. 11. “Can you please not flap/rock/spin/jump in public? It’s embarrassing.” Flapping, rocking, spinning, jumping, or other stimming (calming behaviors), in the vast majority of cases, hurts neither the person doing it nor anyone else nearby. There’s nothing wrong with stimming, and this statement communicates that the Autistic person should stop acting like him or herself or stop moving in ways that come naturally and instinctively. This is like asking a Christian who likes to wear cross jewelry to please not wear a cross necklace in public, or asking a Latino or Hispanic from an hispanohablantecountry to please not speak Spanish while in public. It’s very offensive, and for some people, could be very triggering (psychologically and emotionally traumatic). 12. “You mean you are a person with autism. You are a person first, not a disability or a disorder label.” Some people on the autism spectrum do prefer to be called people with autism, and if talking to someone who does, you should call him or her a person with autism. Many of us, however, prefer to be called Autistic or Autistic people, and if you are talking to someone who prefers to be called Autistic, you shouldalso respect his or her preferences in referring to him or herself, and call that person Autistic. Everyone has the right to decide how they would like to be described, and you should respect that right. 13. “What’s it like to be Autistic?” Just as it would be improper, rude, and demeaning for someone to ask me what it is like to be Asian, it is improper, rude, and demeaning to ask people belonging to any marginalized group what it is like to be the way that they are. You shouldn’t ask someone whom you don’t know well what it’s like to be Autistic outside the context of a conference or panel presentation about that person’s experiences–in which case, more specific questions might actually be better and more effective–and if the person is someone whom you know well, you still should refrain from any variation on this question if the person has made it clear that the topic is an uncomfortable or off-limits one. Besides, every Autistic person’s experiences vary so much that it’d be an injustice to all of us for you to ask a question that implies that there’s one way to experience being Autistic. While we share certain characteristics and experiences of the world, our life stories and our experiences with people and ableism are vastly different. 14. “Have you ever heard of Temple Grandin? Her books are really amazing!” The answer is almost always yes. But it gets very tiresome for Autistic people to constantly hear about Temple Grandin day in and day out. There are many prominent Autistic people in diverse fields and known for a variety of accomplishments, and it’s very annoying to be constantly compared to the one same person all the time. 15. (Asking a question about the Autistic person to a parent, support person, aide, sibling, or friend who is standing or sitting beside the Autistic person ) Please don’t talk about us as if we’re not in the room when we’re sitting or standing right here. Just don’t. The message that that communicates to us is that we don’t matter and can’t possibly have anything meaningful to communicate. Lydia Brown is the 2012 Patricia
Morrissey Disability Policy Fellow at the Institute for
Educational Leadership Center for Workforce Development. She
also interns for the Autistic Self Advocacy Network. Lydia
is also a member of the National Council on Independent
Living Youth Caucus, the Georgetown University Center for
Excellence in Developmental Disabilities Consumer Advisory
Council, and TASH New England’s Board of Directors. In
2011, she served on the Adult Services Subcommittee of the
Massachusetts Special Commission Relative to Autism, and in
early 2012, she served on the National Youth Leadership
Network Outreach and Awareness Committee. Lydia is an
undergraduate at Georgetown University. This essay
originally appeared in Lydia’s blog Autistic Hoya 35 Things Not to Say
to the Mother of a Child With Autism Most people don't mean any harm. Some are simply at a loss for words, while others are really trying to help ... in their own off-target way. But that doesn't mean those encounters don't affect parents just the same. I gathered input from a group of mothers who are raising children with autism as to the most hurtful, insensitive, and outrageous things people have said to them. I cringed at a few that I may have said at some point in my life (#2), but mostly I was blown away by the blatant ignorance some of these statements reflect. So in the name of building more awareness and abolishing some of these misconceptions, here are 35 things NOT to say to the mother of a child with autism. More from The Stir: 4 Ways You Can Try to Prevent Autism Now 1.There's a book out about how to cure your kid. 2.Oh, my kid does that. 3.All kids do that. 4.He'll/she'll outgrow it. 5.But he seems so normal! 6.I'm so sorry. 7.That's such a trendy thing to have right now. 8.Have you tried spanking him? 9.Are you worried about his future? 10.I can't believe you had more kids. 11.Special children are such a blessing, aren't they? 12.Is he ignoring me? 13.Oooh, I just LOOOOVE special needs children. 14.God wouldn't give you more than you can handle. 15.Are you sure he's autistic? 16.Do you think he'll ever learn to drive? 17.You just need to give him more social opportunities. Join more groups. 18.When I was a kid, we just weren't allowed to act that way. It wasn't an option. 19.He'll grow out of it and be the next Bill Gates. 20.But he's so happy! 21.Get him in early intervention, and he'll be fine. 22.What's wrong with him? 23.But he's so smart... 24.I would never be able to do what you do for your kids. 25.God chose the parents well. 26.What is her savant skill? 27.My kids tantrum [or whatever] all the time, too! 28.Sometimes I think have autism, too! 29.If I only gave her more vitamins, I could cure her. 30.Ugh, my toddler just will not SHUT UP! I'm about to go nuts with the incessant talking! -- said to mother of non-verbal child. 31.Everyone has something. 32.Aren't you afraid? 33.I didn't have kids because my brother/uncle/cousin has autism, and so I didn't want to risk it. 34.But he's so beautiful and he looks so normal. 35.In the 80's it was dyslexia, in the '90s ADHD, and now it seems autism is the popular diagnosis. As for something helpful to say. One mom shared this: I'd been sitting on the sidewalk with B for about half an hour waiting for a meltdown to subside when a lady walked by and said, "Hang in there, Mom." I felt almost hugged by the inclusion of that statement. I wish I'd gotten to thank her, but I looked up and she was gone. Source: thestir.cafemom.com/being_a_mom/151805/35_things_not_to_say
Autism
Spectrum Disorder (ASD) Now Affecting 1 in 54 Boys in the
US The number represents a 23 percent increase in the last two years and 78 percent in the past five years. But that was just the average—the numbers were much greater for Hispanics (110 percent) and black children (91 percent). The study, published in the CDC's Morbidity and Mortality Weekly Report , also found that ASDs are nearly five times more common among boys than girls. Broken down, the numbers equate to 1 in 54 boys with ASDs, and 1 in 252 girls. The updated estimates are based on data collected in 14 American communities during 2008. These communities comprised over eight percent of all American 8-year-olds that year. Interestingly, the number of children with ASDs varied widely from site to site. The highest prevalence was found in Utah, where a staggering 1 in 47 eight-year-olds were identified with some form of ASD. New Jersey was also far higher than
the average, with 1 in 49. What's really going on here? Autism
Today Presents…..Temple By Telephone! When Karen Simmons Sicoli,C.E.O.
of autismtoday.com
Dr. Temple Grandin, author and presenter, will be leading a “Live Interactive Teleclass” for the first time ever March 25th from 4:00 p.m. to 5:00 p.m. PST (Pacific Standard Time) available to anyone with a phone. Temple’s best selling books “Emergence Labeled Autistic", and "Thinking In Pictures” have helped countless individuals worldwide to understand how a person with Autism thinks and feels. You see, Temple is also a person with Autism! Parents, teachers and all people related to Autism and/or Asperger’s Syndrome need to be on this call! (*Note, there are a limited number of lines so it’s first come, first served!). Karen was the recent recipient of the
“Internet Entrepreneur of the Year Award” by Mark
Victor Hansen, author, Chicken Soup for The Soul
Series and Robert Allen, author, Nothing Down.
You can check out her online Autism and Asperger’s
Syndrome Magazine and Resource center at: Autism Today
www.autismtoday.com
“My dream with these classes is to bring the teaching and inspiration of presenters such as Temple Grandin to parents and educators who don’t have the time or money to be traveling to different conferences every week. Being a parent myself, I knew that there is a need, signing up a presenter like Temple was a great confirmation that we are really onto something here. For more information about Autism
Today, visit www.autismtoday.com
Differences
found in autistic brains Autism is a developmental disability that affects the way a person communicates and interacts with other people. Some people with autism have trouble making sense of the world at large. As a result, their ability to develop friendships is impaired. Some also have a limited capacity to understand other people's feelings. The scientists examined brain tissue from nine autistic patients and nine people who did not have the condition. They focused on structures within the brain known as cell minicolumns which play an important role in the way the brain takes in information and responds to it. The cell minicolumns of autistic patients were found to be significantly smaller, but there were many more of them. Researcher Dr Manuel Casanova said the increased amount of cell minicolumns in autistic people could mean that they are constantly in a state of overarousal. Their poor communication skills could be an attempt to diminish this arousal. Brainstem damage Previous research has suggested that autism is linked to damage to a part of the brain called the brainstem in the early stages of development. It is thought that this early injury might somehow interfere with the proper development or wiring of other brain regions resulting in the behavioural symptoms of autism. A spokesperson for the UK National Autistic Society said the new research was consistent with this theory. "If the ability for complex communication is due to the subtle wiring of the millions of minicolumns found throughout the brain then any early impairments in development could explain the difficulties faced by people with autism spectrum disorders in the world. "Potentially it might lead to an understanding of how to help these individuals although this is a long way off. Certainly the study reported is consistent with what is known about the difficulties people with autism spectrum disorders face in processing information." The frontal lobe of the brain is concerned with reasoning, planning, parts of speech and movement, emotions, and problem-solving. The temporal lobe is concerned with perception and recognition of sounds and memory. The new research was carried out by scientists at the Medical College of Georgia, the University of South Carolina, and the Downtown VA Medical Center in Augusta, Georgia. It is reported in Neurology, the scientific journal of the American Academy of Neurology. Source: www.healthlinkusa.com/getpage.asp?http://news.bbc.co.uk/hi/english/health/newsid_1813000/1813730.stm
Scientists
Retract Vaccine-Autism Link New Research On
Autism Points To A Novel "Gut" Disease In Some Kids Autism CDC Study
Finds Autism To Be Less Rare Autism Lawsuits Link
Mercury With Autism Autism Microsoft, UW
develop program to treat autism syndrome online In Seattle, which along with the Bay Area has the highest reported cases of Asperger's, researcher Felice Orlich is working with Microsoft to help speed up the wait for those kids. "The majority of kids who come (for treatment) just want to make friends and they don't know how," said Orlich, a clinical neuropsychologist with the University of Washington. "They just don't get it." Microsoft Research and the Seattle university's Autism Center have developed a program called KidTalk that aims to teach much-needed social skills online. A pilot-test program began in April, 2002. KidTalk looks much like a typical computer chat room, with lines of text from different participants running down one side of the screen and smiley-face icons representing the participants on the other. But instead of just letting the kids chat, the program presents them with a script for social interaction, such as a birthday party, and asks them to perform specific social tasks. Kids who participate well are rewarded with points and smiling faces. Those who don't chat or chat too much will see their oversized face icon move away from the group. A therapist moderates the session and can send messages to the participants privately, offering tips and rewards. Kids who suffer from Asperger's — far more serious than social unease — may not even be able to simply introduce themselves, let alone follow the subtle social context of a typical party. Isolated and frustrated, many kids also suffer from depression and obsessive-compulsive disorder and can grow angry, even violent, at even the most minor change in routine. While some get one-on-one therapy, many parents say group therapy is particularly helpful because kids learn to interact with kids their own age. Parents and researchers think online therapy might be more comfortable to Asperger's sufferers, who find solace in the familiar, rules-based structure of computer interaction. Many also feel much less anxiety when they can organize their thoughts and type them, rather than speak. The whole thing about Asperger's is
that they need to understand more about the
nonverbal-language skills. The nonverbal language that you
use, which is all the facial expressions and the body
language, is not something you can really learn
(online). The
Autistic Self Advocacy Network Who We Are The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for Autistic people. ASAN was created to serve as a national grassroots disability rights organization for the Autistic community, and does so by advocating for systems change and ensuring that the voices of Autistic people are heard in policy debates and the halls of power while working to educate communities and improve public perceptions of autism. ASAN’s members and supporters include Autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators and friends. Position Statements ASAN advocates specific policy positions on issues of importance to Autistic people and others with disabilities. In so doing, we seek to ensure the meaningful involvement of Autistic individuals in making policy at all levels, to promote a culture of inclusion and respect for all, to enforce the rights of Autistic people to equal opportunity at school and at work, and to improve funding for community services and supports along with research into how they can best be provided. Autism Acceptance Month April is Autism Acceptance Month, part of a history of campaigns by autistic people and our allies to shift the month’s focus from autism awareness to autism acceptance. In support of this community-wide effort, ASAN has created a dedicated website for Autism Acceptance Month, and provides unique programming every April focused on promoting acceptance and inclusion and changing the dialogue about autism from fear, pity, and tragedy to support, acceptance, and empowerment. The tagline for our Autism Acceptance Month website is “Acceptance is an action.” This means that autism acceptance is an active process that requires both a shift in thinking and in action. To support this endeavour, our website provides fact sheets and resources about autism for autistic people, family members, educators, and the general public, as well as a home for our Listen Up! PSA campaign series, blogs, a selection of self-advocates and families members talking about what autism acceptance means to them and looks like in their everyday lives, and much more. The website also serves as a central location for posting and sharing information about autism acceptance-themed events occurring across the United States throughout April. Finally, the website features a pledge visitors can sign, committing not to give your time, business or attendance to autism events that talk about Autistic people without including us. We invite you to visit the Autism
Acceptance Month website, sign the pledge, and share the
resources with your friends and colleagues. Together, we can
work to change dialogue about autism from fear, pity, and
tragedy to support, acceptance, and empowerment. Autistics
Need Acceptance, Not Cure National headlines that describe autism as an epidemic, or pandemic. Public service announcements liken autism to being kidnapped. A government Web site defines autism as a "devastating scourge." An autism "expert" decrees that autism is worse "than Sept. 11 and AIDS combined." An Autism Society Canada board member proclaims that autism is worse than cancer — because people with autism have normal lifespans. Have you — like my son and me — ever heard parents say how learning that their child was autistic was like experiencing a death in their family? Have you ever been at the playground when a mother classifies her children, standing right there beside her, as this one who is autistic but these other two who are — thank goodness — perfectly normal? They say that autism entails difficulty taking another person's perspective, appreciating how another person might feel. But when I read or hear such hate speech I wonder: Exactly who has a problem taking another person's perspective? Who can't appreciate the feelings of others? My son surely can. He understands quite well that there are so-called autism "advocates" who despise autism, who march thousand-fold against it with placards calling for its defeat, its demise. His demise. Oh, you say, those people don't want to get rid of my son, they just want to get rid of that part of him that's autistic. But research demonstrates that autistic traits are distributed into the non-autistic population; some people have more of them, some have fewer. History suggests that many individuals whom we would today diagnose as autistic — some severely so — contributed profoundly to our art, our math, our science, and our literature. Most poignantly, many autistics affirm that it would be impossible to segregate the part of them that is autistic. To take away their autism is to take away their personhood. Despite our politically correct labeling, they are autistic; they don't "have" autism any more than homosexuals have gayness or lesbianism. Like their predecessors in human rights, many autistics don't want to be cured; they want to be accepted. And like other predecessors in civil rights, many autistics don't want to be required to imitate the majority just to earn their rightful place in society. I'm a middle-aged psychology professor who holds an endowed chair at a major research university. But my son has taught me far more than I ever learned in my lab. Every time he walks by a poster avowing that autism must be eradicated, he teaches me grace. Every time he ignores one of the countless scholarly articles that tower above my desk, asserting he is disordered, he teaches me tolerance. Every time he embraces a world that so frequently rebuffs him, he teaches me unconditional love. What if next year we celebrate the diversity of social interaction observed within and across all cultures? What if this "awareness" month marked a time to appreciate the variation that all humans demonstrate in their style and competence in communication? What if it heralded an era during which we marveled at the determined focus that in my occupation often wins indefinite tenure but in a precocious child gets labeled as diseased? Then, neither my son nor I would feel
compelled to hide. I Want to Tell
You a Secret About Autism Awareness Behavior is communication. That's it. That's all. That's everything. If you put your mental backbone into behavioral awareness, into trying to understand why a person with autism, or a person associated with autism, behaves the way they do -- if you can make yourself truly aware of that person's needs -- then that is when the connections will happen, that is when you will make a difference, that is when awareness can leapfrog goodwill, and translate into real-world benefits and positive actions. If you're a parent of a young child with a new autism diagnosis, a behavioral awareness mindshift can be hard. It's not how most of us are taught to think about parenting. And you're already struggling with so much right now: you love your child, want the best outcome for your child -- yet you've been handed an autism label with all its associated baggage and media fearmongering. You need to remember that an autism label is just that -- a label. It can help describe your child, but it doesn't define your child. You need to set the label aside, enlist it as needed, and instead hyperfocus on what your child does, and why they do it. You'll probably have to jettison some lingering hopes and dreams about your child's future to focus on your child's reality -- but since parenting always involves a large amount of eventual ego-disentangling, assure yourself that you're actually ahead of the curve. You can learn a lot from parents who actively practice behavioral awareness, parents like Todd Drezner, who directed the must-see autism understanding and acceptance movie Loving Lampposts; Kristina Chew, mother of the legendary and now teenage Charlie; Jennifer Byde Myers, whose son Jake has a constellation of diagnoses besides autism; and author Laura Shumaker, whose son Matthew is legally of drinking age. But, the behaviors! They don't always make sense, not on the surface, not if you've never encountered anything like them before. Does your child scream if they can't wear their favorite shoes? Can they talk happily (and indefinitely) about sprinkler systems or precious gems or superheroes? Do they enjoy fondling material of certain textures without regard for where or on whom that fabric may be located? Do they fear the toilet, the market, the dentist? Make understanding those behaviors the focus of your approach. Decide which quirks are quirky, and which are legitimate impediments to learning, self-care, health, and socialization -- then put your energies into helping your child get past the roadblocks. Get professional help if possible, from a behaviorist who can explain that yelling at a child to stop unspooling toilet paper or "punishing" a child by ousting them from circle time may actually be exactly what that kid wants -- you may be unwittingly helping perpetuate undesired behaviors. But know that not all professionals are going to be in tune with your child's behaviors, no matter how much training and experience they've had. Be careful about ceding authority to a professional whose own behavior is more about showcasing their knowledge, and less about applying their observation skills to help you or your child. Most autism community members who practice behavioral awareness will eventually encounter autism parents who disagree about best autism practices. And that's OK, too -- if you understand those parents' behavior. Are they truly interested in giving their child the best life possible? Do they fight hard for educational placements and evidence-based supports? Are any of their chosen therapies actively harming their child? If the answers are "yes," "yes," and "no," then you likely have more in common with those parents than not, and the relationships are worth pursuing. You don't have to agree with autism parents about every last thing -- I doubt that any useful, forward-thinking community is a Shangri-La of consensus. But you do need to be wary of parents who place their egos, their fear of autism, and their desire for a "typical" child above the needs of the actual children in their care. Still, you should support those parents by listening, if they'll let you -- with enough positive role modeling, they may swing round and start investing in behavioral awareness, their kids might receive respect in addition to love, and our community will strengthen and become more whole. When I feel the need to better understand my son Leo's behaviors, or when I'm feeling low because despite his and our best efforts, we cannot solve his behavioral crises, I seek solace in the experiences of people with autism. Sometimes I use Twitter -- a great resource for queries both specific and general (many of my Twitter conversations have deepened into cherished friendships). Sometimes I search those same autistics' blogs or message boards as a grateful lurker. I don't always find agreement -- peoples' backgrounds and experience vary, as they do in most populations. And not all people with autism are interested in being role models or sounding boards for parents like me, which is fair. But I almost always come away with greater understanding, useful information, and a renewed awe for the generosity of the autistic community. Behavioral awareness is not a magical mitigation tool. We still have tough times: Leo finds summers and their schedule disruptions disorienting and distressing, and sometimes he is inconsolable. My husband and I do our best to understand why Leo gets so upset, and sometimes Leo tries to tell us. But our boy doesn't always have the language he needs; at times, he cries himself to sleep out of frustration and exhaustion. It breaks all three of our hearts. I know these episodes will get easier
as Leo's communication skills improve. I also know that they
used to be commonplace, especially when Leo was little,
before we understood so many of the behaviors that make our
wonderful boy tick, and before we had the awareness to
appreciate our son for exactly who he is. Financial
Resource Guide For Families Of Children With Autism -
National Debt Relief orginisation
Autism spectrum disorder (ASD) is a developmental disorder that affects one in 44 children. The severity of each case varies significantly, and children can be reliably diagnosed as early as 2 years old. In this guide, you will find advice for saving money on medical care and day-to-day expenses, as well as an introduction to programs and funds meant to support families of children with ASD. How does autism impact your family finances? Raising a child with any type of special needs can have many unforeseen effects on the budget. Prescriptions, doctor visits, and therapy sessions cost enough on their own. The time spent and the cost of traveling to appointments can add to your financial stress. Additionally, families might find they need to move to an area that is more conducive to raising a child with special needs. This could mean a neighborhood with more amenities, better schooling, and other important considerations. Along with a better neighborhood normally comes higher costs. This makes it all the more important to focus on budgeting and the fundamentals of finance. Understanding your financial picture Your financial picture is another way of describing your net worth, or the total of your family’s worth, including assets, debts, income, and costs. Mapping this out can help you understand how much you earn, and where the money goes. This is important information for planning your family budget and is especially useful for seeing how best to allocate funds to cover your child’s medical needs. Calculating your net worth is a multi-faceted process. But if you use a budgeting or bill management app, it can be a far more straightforward process. What to do when debt impacts your family finances One of the hardest things about struggling financially is that one simple debt can eventually spiral into a huge issue. This is when families are sometimes forced to turn to one credit card to pay off another. It can be all too easy to get to the point where paying off high-interest debt seems overwhelming and unattainable. This is especially true with unexpected costs, such as medical bills and other treatments for children with special needs. Tips and tricks for dealing with medical bills Medical bills can add up, especially if you have a high deductible, or your child needs a procedure that insurance won’t cover. Still, there are ways you can try to reduce the impact of these charges.
Prioritizing debts Understanding how to properly prioritize your debts is an important skill for debt management. This includes debts incurred from assistive care for a child with ASD. If you can afford it, it is best to make more than the minimum payment. Pay off debts with higher interest rates first. However, if that isn’t an option, it is always possible to seek help. Debt relief can help you lower the amount you owe and pay it off in a shorter amount of time. Reaching out for help and support If you are grappling with debt, there are several options to help get your finances back on track. You can ask for support via crowdsourcing platforms as well as from family and friends. Other forms of assistance include debt cancellation, consolidation, and debt relief. Understanding these forms of assistance is key to deciding whether they will put you in a better place financially so that your focus can remain on your child’s needs. On a slightly different note, debt can negatively affect your mental and physical health. Eliminating it is important for your family’s well-being and stability. There are many support groups that focus solely on autism. You can find tips from people who are currently facing similar obstacles or who have already come out on the other side. At the same time, you can offer suggestions to others who are behind you in the process. Medical debt relief Families struggling with medical debt may be able to find relief or even forgiveness through a grant or charity (more on that below). A third-party company could even help to negotiate debt reduction or outright cancellation for those who face insurmountable medical bills. However, please note that you may still need to pay taxes on canceled debt. Furthermore, it is important to confirm that your debt cancellation agency won’t charge you unaffordable fees for their service. The last thing you need is to incur additional debt when your original goal is trying to pay off your balances. Debt Consolidation Debt consolidation rolls multiple debts, typically high-interest debt such as credit card bills, into a single payment. The new loan will usually charge a lower interest rate than your current average. This helps you reduce your total debt and reorganize it so you can pay it off faster. Consolidation can be especially effective as a short-term solution for reducing payments. If you don’t like juggling multiple bill payments, this option could make your life easier. However, depending on the new interest rate and the original interest rates of the debts being consolidated, it may end up costing you more in the long run. Credit Card Debt It may seem like a good idea to use a credit card to cover health costs, but that should be an option of last resort. As always, avoiding high-interest credit card debt by paying the full balance each month is the best policy. It is important to keep your credit score healthy and you might eliminate your chances of negotiating down the debt. Debt consolidation or a personal loan would serve your needs much better. Covering medical costs with federal aid Parents who have children with special needs often find themselves facing many unforeseen medical costs. Fortunately, several government resources exist to help you pay for these medical procedures and services. Federal medical coverage To help provide financial assistance for families in need, several federal programs offer different types of funding. Eligibility varies by program, as does the application process.
Flexible spending accounts and health savings accounts (FSA and HSA) Individual health plans such as flexible spending accounts and health savings accounts provide an alternative way to pay for healthcare. Both options are untaxed, and the main difference is that HSAs are controlled by the individual while FSAs are controlled by an employer. Essentially, you or your employer deposits money into an account dedicated solely for medical expenses. Your employer may match the funds you put in. The flexibility of these plans makes them great options for parents of children with ASD since money can be used for a variety of things, such as therapy, appointment travel costs, and medical procedures. An intriguing aspect of HSA plans is that they can also be used as effective retirement plans. The money deposited is not only tax deductible, but it also isn’t taxed when you withdraw it for eligible medical costs. Paying for educational or medically necessary assistive technology and aids Insurance is unfortunately not likely to cover necessities like sensory toys, educational videos, as well as other technology and aids. However, that doesn’t mean you need to pay full price or take on debt. There are several options families have for gaining access to these resources.
Charity assistance Additionally, some charities can provide resources:
Covering everyday financial obligations Childcare involves more than just medical expenses, and everyday costs of living can be quite expensive. In addition to careful budgeting, families with children on the spectrum can consider some of the following programs to help make ends meet. Federal financial assistance options for parents of special needs children The federal government also provides financial assistance programs for families of children with special needs:
Grants for parents who have children with special needs Governments and organizations such as charities offer programs that provide grants to cover specific expenses.
Housing assistance The following programs can help provide housing assistance, including funding for rent, renovations, and repair:
Finding access to and a means of paying for housing is a big step in arranging for your child’s future. Convenience and safety are important to protect your child from stress and injuries. Preparing for your child’s future and independence Taking measures requires a lot of planning and consideration. Higher education, emergencies, and living arrangements are just a few of the things you will need to consider. Higher education After primary school, higher education can help your child have a fulfilling future.
Special needs trusts A special needs trust is a good way to manage funds for a child with special needs and ensure the money you put into the fund is safe and available when it is needed. Trusts allow a guardian to control money and decide when the beneficiary can use it. It is an effective tool for parents of children with autism to provide financial security well into their future. Trusts are legally binding agreements, so parents looking to set up a special needs trust should seek specialized legal assistance for an in-depth understanding of how it works. Emergency fund To stay flexible and prepare for unexpected situations, it is a good idea to start an emergency fund. Save as much as you can afford into a special fund. The goal is to have quick access to money that can cover surprise medical bills and other unanticipated costs immediately. Additional autism resources Here are some organizations that specialize in resources for families with children on the spectrum:
Children on the spectrum have a lot to
contribute to their families and society. With the right
help and support, you can ensure they reach their potential
and live a fulfilling life. National Debt Relief National Debt Relief is one of the largest and best-rated debt settlement companies in the country. In addition to providing excellent, 5-star services to our clients, we also focus on educating consumers across America on how to best manage their money. Our posts cover topics around personal finance, saving tips, and much more. We’ve served thousands of clients, settled over $1 billion in consumer debt, and our services have been featured on sites like NerdWallet, Mashable, HuffPost, and Glamour. Get A Free Savings Estimate Today See How Quickly You Can Be Debt Free No Fees Until Your Accounts Are Settled * * * Today, 50 families in American will find out that their child has autism! - Autism Societ |
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