The Summer is definitely here and we are extremely busy. I am keeping the kids as busy as I can. So far they have experienced Vacation Bible School at First Baptist Church, Martin College Summer Youth Camp, a week long vacation in the Smokey Mountains and swimming lessons. We still have a little over 4 wks of summer vacation left… with continued swimming lessons for 2 wks and Vacation Bible School at First United Methodist Church. I can’t help but feel a little overwhelmed with who needs to be where and when. 🙂
Speaking of Vacation – we went with some friends of ours to Pigeon Forge, Gatlinburg and Sevierville, Tennessee in the Smokey Mountains… we had a good time. We experienced 2 days of Dollywood, Ripley’s Odditorium, Ripley’s 5d, Hollywood Wax Museum, Hannah’s Mirror Maze, Castle of Chaos, Titantic Museum, The Apple Barn, The Old Mill, Bubba Gumps Restaurant, Joe’s Crab Shack, Corky’s BBQ, an awesome arcade and several cute shops along the Pigeon Forge strip. It was a busy vacation – not very relaxing… but fun. We will be in Florida during the fall for my mom’s 60th birthday – so we can relax then. 🙂
One evening while on vacation – I heard something from a child that I can’t get out of my head.
Our friend is a tall, big, muscular guy who has done some MMA fighting in his day. While at the swimming pool a girl (probably around 11 to 12 years old) and her brother (around 9 years old) were in the pool as well. They told our friend that he looked like the actor who plays Boomer (which they got his name wrong – it is Goomer) on the Nickelodeon Show “Sam and Cat”. Yes, he does favor the actor some. The girl goes on to talk to him and says… “Yeah, I think Boomer is autistic. Something is wrong with him.” I kind of took her words in and didn’t say anything because I did not want to embarrass Carter who was at the other end of the pool and who didn’t hear the conversation. If you are not familiar with the character “Goomer” – he has a low IQ… which the show plays it off as all for fun – here is a clip of him on the show http://www.nick.com/videos/clip/sam-and-cat-goomer-med-saturday-NHD17265-01.html.
The more I have thought about it the more I should have stepped up and educated her and/or her mother who was sitting in a lounge chair reading a book and who was definitely a little different herself – and I am not saying there is anything “wrong” with being different.
I wished I had stopped the little girl and told her that the boy she was just playing with a few minutes ago prior to her statement… the boy she obviously saw nothing “wrong” with… had autism. Then I would have gone from there in a nice way because I would never make the subject and the understanding of autism hostile or ugly. I always try to explain to people in an informative and a personal way… because I know that people are just uneducated regarding autism.
It is not the girls fault she does not know what autism is… she is just uneducated on the facts. She just assumed that because the character with the low IQ – had autism. That is one of the stereotypes… when the facts are that many children/adults with autism are brilliant on so many levels – whether it be book smarts, world smarts, artistic, musical, etc…. and believe it or not -some autistic children/adults IQ’s are higher than most typical children/adults.
It bothers me so much that people assume so much – not only with autism but with any disorder and/or disability.
I am giving my avid readers a challenge… if you hear someone say things that are not true about autism – direct them to the facts – educate them – and if you are not sure the entire facts but know what their saying is not true – direct them here and I can point them in the right direction.
I love this that Hoya wrote on her blog “Autistic Hoya”… http://www.autistichoya.com/2012/02/15-things-you-should-never-say-to.html
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, likeKassiane 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 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.
“Through the blur, I wondered if I was alone or if other parents felt the same way I did – that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that – a parent’s heart bared, beating forever outside its chest.” ― Debra Ginsberg