Tag Archives: Autistic

Parenting (Autistic) Kids is Hard

“Be kind, for everyone you know is fighting a hard battle.”

Being a parent is hard. Really hard. When I say that, I don’t mean that I wish that I hadn’t had children or that I wish they were easier kids. I mean that raising other human beings that you love more than you love yourself is breathtakingly difficult.

Your child’s struggles—his anxiety, her aching desire to fit in, their stumbles and bumps as they travel their roads to become adults responsible for themselves—can be inspiring, heartbreaking, hilarious, scary, remarkable, stressful, unexpected, delightful, worrisome…add your descriptor here.

Sometimes it is many things at once.

It is impossible to know what it is like to be a parent until you are one.

Ever since I started blogging about my kids, which has been five and a half years now, I have consistently gotten emails, messages, tweets, personal hugs, and all other manner of communication thanking me for my honesty in writing about just how damn hard it is to raise kids. People tell me that they thought they were the only one. They tell me that they thought they were alone. They tell me how much it matters to them to know that they are not the only ones who are struggling.

Sharing that bond over the difficulty of parenting and acknowledging that it is so hard and even that sometimes our kids are assholes, well, that acts as a safety valve that releases pressure. Knowing that we are not in it alone, especially if the act of raising our children isolates us from each other, sometimes helps us make it through a heartbreakingly scary day until we can get to a delightful one.

Raising a child with autism or another disability often imposes even more isolation upon parents. In addition to the joys and problems that parents of typical kids face, we have a whole other set of hurdles (and, yes, a whole other set of joys as well). Yes, we get to experience the unique point of view that our special needs kids bring to life and we get the amazement every day of seeing what our beautiful autistic kids are capable of. I wouldn’t change the neurodiverse makeup of my family even if I could.

But we also face great challenges. We have to decide how best to help our children with their extra struggles in the face of confusing and conflicting information. We have to learn to advocate for our children, something that isn’t always easy, and is often extremely difficult. We have to help them navigate the social difficulties of the world, even if doing so is hard for us ourselves. Often we end up losing friends and family members because they don’t understand what we are going through, because our stresses are too much for them, because they want us to fix our children when all we want to do is accept and teach them. We lose the ability to socialize on the school playground because we have to keep track of our kids to keep them from “eloping” or having problems with other kids because of social difficulties. Some of us can’t leave our children alone ever, even in our own homes, and still count on them remaining safe. Most of us worry about making sure not only that we safely usher our kids to adulthood, but that we are prepared to keep them safe and cared for once they are adults and even once we are gone.

We aren’t underestimating our kids. We aren’t feeling sorry for ourselves. We believe in our children’s genius and their good and their capacity to learn and contribute and be happy. We are hoping for the best, but preparing for the worst. When you have a child, when you are a parent, that is what you do.

I’m not saying it is harder for us than it is for our kids. And I am not saying that people should pay attention to our needs more than those of autistic children and adults, but I am saying that our road is valid and important as well. I am saying that watching your child struggle in the way that autistic children do can break your heart. I am saying that parenting autistic children is hard.

This is not to say that I wish Jack—or any of my children—were different, were typical. This is not to say that I do not accept my child exactly as he is. This is not saying that I want pity or kudos for my parenting. This is only to say that parenting is sometimes hard.

Just as it helps parents of typical kids to hear that they are not alone, the same goes double for parents of autistic kids. When a struggling parent hears, “Yes. It’s hard,” “You’re not alone,” “This is what my family tried,” “It gets easier”? That can be life-saving.

I know a lot of parents of autistic kids and a lot of them feel like they can’t say publicly that it is hard to raise their children. They feel that if they break down and say that they wish they could have one easy day that they will be accused of not truly accepting and loving their own kids. Valid or not, they feel that they are criticized and judged whenever they say something negative about raising their children.

I know that there are are parents who don’t accept their children’s autism. I know that there are parents who want to “fix,” who want to cure. I know there are parents who do not speak respectfully about their children. However, most of the parents I know would fight lions with their bare hands for their children—exactly as they are. I know many, many parents who do accept their children as autistic—really, truly do—but who sometimes have days when they just can’t hack it. They know they will be able to pull it together tomorrow, but they need someone to tell them, “It’s okay. Yes, it’s hard. You’re not alone. You can do this.”

I believe that it is vital to hear autistic voices. I know that the number one thing that brought me to my place of acceptance and embrace of Jack and his autism soon after I first started learning about the spectrum was reading things written by autistic adults. Without question, I believe that their voices are the ones that we should follow. I know that just as you cannot know what it is like to parent an autistic child unless you parent an autistic child, you also cannot know what it is like to be autistic unless you are autistic.

Likewise, none of us can truly know anyone else’s experience. Your experience growing up autistic is not the same as my experience growing up autistic and neither of us had the same experience that Jack has growing up autistic. But we can all learn from each other, as long as we are willing to listen. I believe that conflict drives conversations forward and that dissenting opinions make everybody think harder.

But most parents really know their kids. And most parents really try hard. And most parents love and embrace their children for who they are. And even if everyone doesn’t, we can’t assume that just because someone says it is hard to parent their child that it means that they don’t accept everything about him. And just as it is vital to respect and amplify autistic voices, it is vital to let parents have hard days without judging them.

I know that autistic adults often feel disrespected by parents. I understand that, because I hear some things spoken by parents that bother me terribly (and vice versa), but many of us want nothing more than to respect both parents and autistic individuals. Sometimes we have to take a chance and lead with respect in hopes that we will be met with the same.

I have three beautiful children. They are amazing gifts to me. Some days, however, I want to sell them all to the highest bidder. When I write about feeling that way, I hope that I do it with humor and respect, and I also hope that some other parent out there reads it and is stronger for knowing that she is not alone.

Quinn, Sam, and Jack They are everything to me. But sometimes “everything” is overwhelming.

*****

I tell my kids all the time to “lead by example.” Head over to White Knuckle Parenting to find out how I actually led my kids by example last weekend.

*****

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Unreliable Neural Responses Found In Autistic Adults

Main Category: Autism
Article Date: 21 Sep 2012 – 0:00 PDT Current ratings for:
Unreliable Neural Responses Found In Autistic Adults
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Autism is a disorder well known for its complex changes in behavior – including repeating actions over and over and having difficulty with social interactions and language. Current approaches to understanding what causes these atypical behaviors focus primarily on specific brain regions associated with these specific behaviors without necessarily linking back to fundamental properties of the brain’s signaling abilities.

New research led by Carnegie Mellon University neuroscientists takes the first step toward deciphering the connection between general brain function and the emergent behavioral patterns in autism. Published in the journal Neuron, the study shows that autistic adults have unreliable neural sensory responses to visual, auditory and somatosensory, or touch, stimuli. This poor response reliability appears to be a fundamental neural characteristic of autism.

“Within the autism research community, most researchers are looking for the location in the brain where autism happens,” said Ilan Dinstein, a postdoctoral researcher in Carnegie Mellon’s Department of Psychology and lead author of the study. “We’re taking a different approach and thinking about how a general characteristic of the brain could be different in autism – and how that might lead to behavioral changes.”

For the study, 14 adults with autism and 14 without – all between the ages of 19 and 39 – completed sensory experiments while inside a functional magnetic resonance imaging (fMRI) machine located at CMU’s Scientific Imaging and Brain Research center. To test the visual system’s neural response, participants were shown a pattern of moving dots. The auditory stimulation consisted of pure tones presented to both ears, and short air puffs were used to stimulate the somatosensory senses. The fMRI measured each individual’s brain activity during the experiments.

In all of the primary cortices, visual, auditory and somatosensory, the within-individual response reliability was significantly lower – by 30-40 percent – in autism; meaning, there was not a typical, predictable response from trial to trial. Thus, in the individuals with autism, there was significant intra-individual variability, with responses varying from strong to weak. Non-autistic adults had replicable and consistent responses from trial to trial.

“This suggests that there is something very fundamental that is altered in the cortical responses in individual’s with autism,” said Marlene Behrmann, professor of psychology at CMU and a leading expert on using brain imaging to understand autism. “It also begins to build a bridge between the kind of genetic changes that might have given rise to autism in the first place – and the kind of changes in the brain that are responsible for autistic behavioral patterns.

“And, what I think is so powerful is that we sampled visual, auditory and somatosensory senses. We were unbelievably thorough and attacked every sensory modality and showed the same pattern of unreliability across all three senses.”

The study also presents the first time that researchers have investigated multiple sensory systems – at a primary brain function level – within the same autistic individual.

“One of the problems with autism is that there is considerable variability in symptoms across individuals,” Dinstein said. “In this case, we have a tremendous amount of data on each individual and each of their three sensory systems. And, we see the same unreliability across all of them in autism relative to the controls.”

While this study focused on adults, the team plans on taking the research further to study how the details of sensory unreliability play out in younger autistic groups.

“We are not suggesting that unreliable sensory – visual, auditory, touch – responses cause autism,” said David Heeger, professor of psychology and neural science at New York University. “But rather that autism might be a consequence of unreliable activity throughout the brain during development. We’ve measured it in sensory areas of the brain but we hypothesize that the same kind of unreliability might be what’s limiting the development of social and language abilities in the brain areas that subserve those functions.”

In addition to expanding autism research to determine when and how basic neural processing affects autism, the research may have clinical implications.

“The poor cortical response reliability observed in the individuals with autism in this study may represent a biomarker which could contribute to better define Autism Spectrum Disorder (ASD) subtypes,” said Pauline Chaste, a visiting research scholar at the University of Pittsburgh Medical Center who was not affiliated with the research but studies how genetic mutations affect psychiatric disorders. “This is very important because of the great heterogeneity of phenotype in ASD which makes the definition of subphenotypes critical for genetic studies as well as for treatment studies. Thus, the use of this biomarker may help to define new targets for treatment but also to assess efficacy. Moreover this study brings new insight into understanding atypical sensory sensitivity in autism, which is a major concern for a vast majority of patients and remains sorely underexplored.”

Article adapted by Medical News Today from original press release. Click ‘references’ tab above for source.
Visit our autism section for the latest news on this subject. Lauren Lorenzi, a research associate at Carnegie Mellon, Nancy Minshew from the Department of Neurology at the University of Pittsburgh and Rafael Malach, the Morris and Barbara Levinson Professor of Brain Research at the Weizmann Institute of Science, were also part of the research team.
The Simons Foundation, Pennsylvania Department of Health and the National Institute of Health and National Institute of Child and Human Development’s Autism Center of Excellence at the University of Pittsburgh funded this research.
This study will appear as the cover story of the October 2012 print issue of Neuron. The issue’s cover design was created by Carnegie Mellon’s Communication Design team.
Carnegie Mellon University Please use one of the following formats to cite this article in your essay, paper or report:

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App On iPod Touch Helps Autistic Adults Work More Efficiently

Editor’s Choice
Main Category: Autism
Also Included In: Medical Devices / Diagnostics;  IT / Internet / E-mail
Article Date: 04 Sep 2012 – 8:00 PDT Current ratings for:
App On iPod Touch Helps Autistic Adults Work More Efficiently
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With difficulties related to behavior, communication, cognition, and sensory processing, people with autism spectrum disorder (ASD) have a hard time not only finding a job, but keeping the job as well. In the United States, just 15% of adults struggling with ASD are getting paid for some type of work. However, according to new research, people with the disorder are able to work more efficiently with the task management and organizational features on personal digital assistants (PDAs).

The research consisted of case studies that demonstrated the use of Apple® iPod touch® PDAs as vocational supports, which was published in the Journal of Vocational Rehabilitation.

Tony Gentry, Ph.D., of the Department of Occupational Therapy at Virginia Commonwealth University in Richmond, VA, and lead author, explained:

“Strategies that provide enlightened workplace supports are clearly needed in order to help people with ASD find useful work and perform successfully on the job. Adults with ASD often have valuable assets and strengths that are sought after in the workplace, such as logical and mathematical ability, exceptional computer skills, or photographic memory.”

The cases took place over a 4 year period, involving the participants in a randomized trial so the experts could observe the use of iPod touch® PDAs as job coaching aids at the participants’ work.

One participant, a daytime custodian at a fast-food restaurant, Jeffrey, struggled with moving from one task to another and could not remember the steps needed to retrieve and stock condiments or to clean the bathrooms. He would show “calming behaviors” (like spinning and humming) whenever he was stressed that he couldn’t do what was needed.

In order for Jeffrey to be able to switch from task to task, the therapist set reminder alarms on the iPod to cue him what to during his shifts. Step-by-step checklists were created using the Notes application so he would be able to efficiently finish each task.

He showed improvement within a week with the help of the reminder cues and task notes. A year later, Jeffrey is thought of by his boss as a reliable employee and will continue to use his new helpful tool on the job. Another participant, a 60 year old woman named Grace, with epilepsy, autism, and mild cerebral palsy, uses the device to help manage her commute on a specialized transportation bus. She use to think that the bus missed her if it was late, which caused her to panic and leave her purse on a park bench and step into the traffic to check to see if it was coming.

She now has alerts set to remind her to go to the bus stop and to call the transportation company if the bus is late. To help her relieve some of the stress while waiting for her ride, she has podcasts of some radio shows and music. The device also contains a custom-made video for Grace to watch how to wait for the bus safely, and what to do if the bus does not come. The subject also uses the iPod at work to help her stay on task and see what needs to be done next. Six months later, Grace is independent and ably, according to her manager.

Researchers observed another subject, Lily, struggling with Downs Syndrome and ADS, who does housekeeping work in the Mother Infant unit of a hospital.

She becomes angry when someone corrects her performance or when someone changes her normal work schedule, which makes her react with inappropriate behaviors like crying and stumping. The participant cannot navigate a calendar on her own, read, or tell time.

She has a verbal application called VoCal on the device thats provides spoken word alerts since she cannot read. The reminders tell her to clock in to work, take breaks, switch tasks, and recharge her iPod.

To show Lily how to complete tasks properly and to remind her to react appropriately when she sees changes in her workplace, she uses the Storykit application which provides verbal prompts and pictures.

If she finishes a day without any childish outbursts, she receives a reward, such as free time to play songs or games. Her success is recorded with the iReward app.

Lily’s work performance improved because of the device, and she also saw a reduction in the behavioral challenges she normally faced. Unfortunately, she misplaced the device after a month and quickly fell into her old routine, but once she received a replacement, she quickly gained independence again in her workplace.

Any generalizations are difficult to make from these three cases because of a wide range of variables in work settings, personal characteristics, and duties, Dr. Gentry pointed out. They do show, however, the flexibility of PDAs as workplace supports for those suffering with ASD.

He concluded:

“This is an exciting time for anyone in the fields of education, physical rehabilitation, and vocational support, where we are seeing a long-awaited merging of consumer products and assistive technologies for all. Field-based research in real world environments is essential to help us determine how best to use these tools to help our clients live more rewarding lives.”

Written by Sarah Glynn
Copyright: Medical News Today
Not to be reproduced without permission of Medical News Today

Visit our autism section for the latest news on this subject. The Apple iPod Touch as a vocational support aid for adults with autism: Three case studies
Tony Gentry, Stephanie Lau, Alissa Molinelli, Amy Fallen, Richard Kriner
Journal of Vocational Rehabilitation September 2012 doi: 10.3233/JVR-2012-0601 Please use one of the following formats to cite this article in your essay, paper or report:

MLA

n.p. “App On iPod Touch Helps Autistic Adults Work More Efficiently.” Medical News Today. MediLexicon, Intl., 4 Sep. 2012. Web.
4 Sep. 2012. APA

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‘App On iPod Touch Helps Autistic Adults Work More Efficiently’

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How To See Autism As A Genuine Perspective And The Reasoning Of An Autistic Mind

For starters I am an Aspie, an individual with Asperger’s Syndrome, a mild form of autism. It seems awfully strange that I am autistic, yet I have such great language skills, especially with typing. I would write with my hand, but my hand-writing is illegible. With that being said, I have a lot to say about my perspective as an autistic man.

First off, if you know someone with autism, then you have more than likely been touched by said person, as we are often very gifted in one way or another, despite our difficulties with communicating with those we interact with. We all feel a need to belong, whether we are autistic or not! We want nothing more than to please our loved-ones, and sometimes this is hard, as we tend to go overboard with things. Autism often comes with what is known as stemming, something that we use to normalize our environment.

Let me take you on an adventure inside of an autistic mind, and how you should view autism as a genuine, yet unique perspective!

Autism is a developmental disorder that affects the normal-functioning of the brain, in an otherwise healthy mind. The way we see the world is above and beyond normal understanding and functioning in the world, where we sometimes don’t understand our culture and society, and when we oftentimes dislike the cultural-norms, as we see the world as too entangled with social-customs, where problems could be solved with instead logic and reasoning, while at the same time we could affect the world with a high-capacity of intuition.

Autistic people feel that the world is unstable, mostly because of the social taboos, which are otherwise natural to us. The world would be much different if we made more sense, and not trying to control how we consume our culture. People want us to eat certain foods, when really we just want to enjoy our meals the way we want, in a healthy way, a way that most people feel is immoral. Why exactly do people believe that all wild-strawberries are poisonous? They hear it from their parents, who heard it from their grandparents, but why don’t they do their own research, or ask a professional?

We often hear that we can’t use our imagination for fun things, that we must work hard, everyday, all day, something that we want to change, as we know that humans are very social animals, and all we want is to explore our imaginations! Our perspectives show our wish to reconnect with our true-nature, the nature of exploring and enjoying life, while everyone else puts too many expectations on us. Everyone should just do what it is that is most enjoyable in life, and not being a drone!

As mentioned above, an autistic person only wants to get enjoyment and entertainment out of life. If everyone were to do what they enjoyed, the world would be a very happy and satisfied place! There are always jobs that you will enjoy, even if it isn’t extravagant. You, believe it or not, can enjoy being a janitor, but if you don’t enjoy it, you only take the job because you feel that “somebody has to do it”! Look, there are people out there who would enjoy that line of work, so leave it to them, and go after what you enjoy!

The autistic mind takes in from their environment, but they take what they get out of it and turn it into something remarkable! They try to make their living more meaningful and enjoyable, also more entertaining. If you were to live as an autistic person, you would totally change your attitude about how people should function! All you would want is to live a life that is meaningful, and you would constantly try to make the world a better place to live, not just for you, but for all who are in your perception.

Joseph D. Smith employs the Aspiezine, a topical blog and social network for those affected by and with autism, whether you are autistic or not!

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15 Things You Should Never Say To An Autistic

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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?”

My son Matthew is kind, earnest, funny, handsome, hardworking, mischievious…and misunderstood like so many on the autism spectrum. Today, Lydia Brown, an accomplished self advocate, shares her perspective:

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15 Things You Should Never Say To 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 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***

Do you have questions? Do you need resources? Email me here lshumaker@sfgate.comand I will do my very best to help.

***

Don’t miss..

Autism and Technology:
Resources and opportunities for Transitional Age Youth, an interactive discussion.

Topics include: Independent Living- Education and Employment.

Audience: YOU, The general public; people with disabilities, their families and friends; veterans, legal community,  vocational rehabilitation; mental and social service providers.

Friday, August 17th, 2011, 1:00 pm – 4:00 pm
Koret Auditorium, San Francisco Public Library
100 Larkin St.
San Francisco CA 94102

RSVP Steven Leibof sleibof@pwdf.org Call at (415) 931-3070 . For anyone needing sign language interpreters,  please contact us no later than August 10, 2012.

CLICK HERE to learn more about speakers.

ALSO, The Morgan Autism Center Conference is September 22. More about it soon, but REGISTER NOW because it is going to be amazing. (Carol Gray is keynote!)

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FOLLOW ME on FACEBOOK and TWITTER.

Posted By: Laura Shumaker(Email) |Aug 12 at 8:35 pm

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15 Things You Should Never Say To An AutisticBlogs

“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?” My son Matthew is kind, earnest, funny, handsome, hardworking, mischievious…and misunderstood like so many on the autism spectrum. Today, Lydia Brown, an accomplished self advocate, shares her perspective: ___ […]

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