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Don't underestimate persons with autism; try instead to understand.Posted Sunday, April 11, 2010, at 7:15 PM
It is autism awareness month. Not many people are aware that one in 150 children is now being diagnosed with autism. That statistic is alarming and it's hard to know what's causing it. I don't think it's vaccinations, based on the research I've seen. I'm not sure about anything environmental that's really all that new. More awareness may be leading to more diagnoses on the high functioning end of the autism spectrum. However, it seems there are more children on the middle to lower functioning parts of the spectrum as well. Chances are, you know a child or young adult with autism. I'm raising one. Dylon My seventeen year old son is hard to miss. He's a junior at Spencer High School and he is about 6'7". His posture is a little off, he has some acne, he's quiet, backward, different. I think he is amazing. Dylon has a one tracked mind -- he loves everything to do with comic book characters, movies, games, etc. He has created thousands of his own characters, often hybrids of existing characters. He went through the Pokemon/Digimon phase about ten years ago and now he draws and spends hours painstakingly editing his digital drawings of various characters. He knows their entire life histories and that of all the villians they've encountered. This semester, Dylon has been fortunate enough to take both sculpture and digital photography in school. In working with clay, he has found a wonderful source of solace from his obsessive, racing thoughts, and a new medium for self-expression. In digital photography, he has found a focus beyond the comic books. He spends hours on composition for his photographs and is constantly eager to take his school-issued camera around the community to find new photography subjects. Our journey with autism. We've always known Dylon was different, but we were young, 21 year old parents and kind of dumb. We just accepted him the way he was, taking advantage of the special education preschool programs offered when he was young. As a result of our stupidity, Dylon was not diagnosed with autism until he was seven -- far too late to use the communication techniques that have worked miracles on toddlers and preschoolers. Autism also commonly has connection to other health problems, like gastrointestinal issues. Dylon went along fairly well in elementary school, but by fifth grade he was falling behind his peers socially. In sixth and seventh grade, at his old middle school, he spent most of his day in a specialized autism classroom. Just before his eighth grade year, we moved here. Dylon reports that here, he is not bullied nearly as much as he was in the larger community we came from. He has some friendly acquaintances though school and youth group, and possibly even some friends. He cares for people, but what really energizes him is his art work. Reaching the end Dylon's class will be graduating in just over a year. Dylon, technically, could stay in high school until age 21. However, we don't see the value of him staying behind in high school after his class moves on. His continued attendance at Spencer High School would very much upset his sister, who will be a freshman in the fall. Most of Dylon's classmates are excitedly looking forward to senior year, taking the ACT, thinking ahead to college. Dylon isn't very excited about school, except for art. Socially, we cannot just send him off to Minneapolis or Chicago to art school. Academically, the challenge of focusing in regular classes has become overwhelming and his grades are slipping. Like everything else in Dylon's life, his future will be necessarily a unique path. Not for the world I wouldn't have traded having Dylon as my oldest son for anything in the world. He's generous, sweet when he wants to be, funny, brilliant and unusual. Raising a child on the autistic spectrum is a formidable task. Parents with children on the lower functioning part of the spectrum, particularly, need more support from the school and community. With the number of children being diagnosed as autistic, it is necessary for the community to understand that not everyone is the same. The world cannot bend for each individual, but a home town can become a less painful place if we agree to be free from ridicule, bullying and refuse to ostracize people who are different from us. A puzzle The autism awareness ribbon has puzzle pieces on it. Autism is a puzzle that is not going to be solved any time soon. Meanwhile the autistic population continues to grow. If there was a cure for autism would I seek it for Dylon? You bet. Like Lorenzo's Oil. I'd sacrifice whatever was required. Unless and until that happens, however, awareness, affirmation and acceptance are all that can alleviate the pain and loneliness of autism, the isolation families of autistic children experience, and the stares, bullying and ridicule that autistic individuals face. It takes courage for a student with high functioning autism to go to school each day. Aware enough to know they don't fit in, but without the social tools to do anything about it, they experience high school on a parallel plain -- isolated in a crowd, seeming next to normal, with uneducated teachers wondering why they don't participate more in class. Autistic and artistic Autism is not a death sentence to a fulfilling life. Famous people with autism include Daryl Hannah, who was diagnosed as "borderline autistic" as a child; Dan Akroyd has said he has Asperger's, a high functioning form of autism, but some say he was joking; Vernon L. Smith, Nobel Laureate in Economics; Satoshi Tajiri, creator of "Pokemon," Temple Grandlin, animal activist; Dylan Scott Pierce, the wildlife illustrator; and Matt Savage, the jazz prodigy. I dream of the day Dylon might have a showing of his art here in Spencer -- where people might finally see the beautiful soul he's unable to express. He has the potential to be on a list of people with autism who've made our world better, or at least different, than it was. Until that day, I pray more pieces of the autism puzzle come together. Comments Showing comments in chronological order [Show most recent comments first] |
Amy Hillgren Peterson has been married to Ed since 1992 and is the mother of three children: one at Spencer High School, one at Spencer Middle School, and one at Lincoln Elementary School. Her articles and essays have won several awards and have appeared in local and national publications. She is the author of a memoir and a novel, and is currently at work on a trilogy of stage plays. She blogs about faith, relationships, simple, sustainable living, mental health and creative writing.
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I believe that autism is real. I do not have an autistic child. Which makes me think of a bumper sticker on the back of a friend's car that says, "My child is autistic, what's your child's excuse?" or something to that effect. That's funny and I really get that. However, I am tired of labels; autistic, ADD, ADHD, Learning Impaired, Gifted, At-Risk, Poser, Skater, Jock, Snob, etc. The list is endless. Are labels really necessary? Why can we not just help our kids reach their full potential without sticking a label on them? It never fails that a label means a certain set of characteristics and then along comes a child who breaks out of those and hence a new label is made. If we all focus on just meeting a kid where they are and then finding a way to take them beyond expectations, labels become obsolete.
Leah, that is a very interesting concept. I think there are too many labels and a lot of new diagnoses out there. I think parents are able to accept the labels because they are necessary to getting their child the help they need at school.
Now that my son is ending his public school years, it is a question of helping him develop his strengths so he can move on to a productive and fulfilling life of his own.
Leah, some of the labels are used to ensure that a child has any special needs met. Without identifying special needs child, and then labeling them as such, they may "slip through the cracks" and not live up to their potential. It really only becomes a problem when people use these labels negatively.
I'm a little standoffish about putting Autism under the same category as 'snob' or 'jock'. Autism isn't a label, it is a condition that needs to be understood. Being a snob, as you put it, is a social label not a physical/mental/emotional condition. That's saying the child can choose to not be Autistic. New 'labels'? You think that a child with Autism should be taught the same as say a child with dyslexia or Tourette's? They are not labels but scientifically proven conditions and each one has different methods of teaching and learning. Being a skater is not a condition but a persons hobby. Autism is a different way of life for everyone involved.
I apologize. Autism is not in the same label category as skater but it is still a label. And I still hold to my viewpoint. I have seen so many kids come thru my daycare already with a label attached to them...autistic, ADD, ADHD etc. Much of the time its whispered behind a hand to an ear. Some of the time and not all the time its a matter of inexperienced parenting and a reliance on a medical field that doesn't have nor wants to explore all the options of cause and treatment before pumping drugs into these kids. I just think its wrong.
Sorry, I just thought of something else with regard to labels. I know a few kids who are stuck in the resource room at school. These kids do not fare well academically in a standard classroom due in part to the fact that they just don't see things the way other kids do. They learn thru visual process or by mechanics. These same kids would fail miserably at ITED's or on the ACT's but they can take apart an engine and put it back together in no time at all. They are labeled and marginalized simply because the school system cannot seem to find a way to teach them in a manner that can be measured. It's a problem that should be addressed.
I agree with you on the pumping of kids with drugs. But if you really have a child with a condition and you have tried everything possible then medicine is not always a bad thing. I have had personal experience with one of the 'labels' you mentioned and I refuse to use drugs so people can deal with it but to find a school that is willing to work with it is whole different situation in itself. I was constantly being told that I needed to make sure my child had their medicine. When, in fact, they were non-medicated. I don't necessarily blame just the medical field for this but society in general. Inexperienced parenting, inability to teach a rather rambunctious child and possibly just the laziness of everyone to let kids be kids. I hear so many parents make rude comments about such-and-such child and how they must be ADD or ADHD because of how they are having a little bit more fun than their fellow classmate or a tad bit louder than another.
Leah,
It sure would be interesting to see you actually set foot in a school and ATTEMPT to teach. How often do we see you post anything positive about education/school/etc.? It gets old. Why is our educational system having struggles? Because people, like yourself, like to sit around and place blame rather than focus on positives and improvement.
Kids are not "stuck" in a resource room. They are placed there because EDUCATED people are working to assist them to the best of their ability.
Teacher 03, I have set foot in many classrooms as I have 6 children in school. I do teach. I get them at 6 weeks and keep them until age 4 or 5 and sometimes after that. I have recommended many children in my care to developmental testing and have been able to assist many parents in addressing issues long before their kids enter the school system. Just because I am not employed by a school does not mean I don't teach and it certainly does not mean that I am uneducated. Sometimes things need to be changed and that change is positive. I was only pointing out that it is another issue that not only Spencer school should address but every school in every community. If you were less defensive and more pro active you too could bring positive change.
Again, it gets old listening to you point out negative after negative in relation to education. Daycare and teaching are very different, and setting foot in a classroom doesn't even begin to give a glimpse into the daily happenings of the school. We try our best to educate and reach every child, and listening to your constant bickering just gets old. And these "labels" you refer to actually help school districts insure individual needs are met. And blaming schools for making kids take ITED/ITBS doesn't make any sense, as these tests are required by the state. Schools assess students in various ways, but many of these methods are not use in state reports because they are not "accepted, standardized tests".
And where do you get off telling me I am not proactive? Yet another comment based on opinion rather than fact. Sit through my classroom before passing judgements about whether I bring about positive change.
Amy, this is a wonderful post! Positivity and awareness are much needed by our society! I enjoyed reading this, thank you for writing it.
Leah,
I apologize if you felt like it was a personal remark towards you. I just think it would be nice to read something positive about education on here. I am sure school-aged children read or hear about this blog more than we may think; it may go a long ways if they also read some positive remarks regarding education! :)
teacher03, I agree with many of your points, and I have noticed that Leah often has a negative attitude towards education. However, I don't feel that that was her aim here. I see children labeled in my school every day. Often, I think some of those labels are "jumping the gun", so to speak- such as labeling a child with ADD/ADHD or even an Autism spectrum disorder before they are diagnosed. It is also common that a child is not a "good test-taker" but IS a good student and some teachers and administrators don't look past the test scores and try to find alternate learning paths for them. I will say, though, that labels, when "earned" from a doctor, psychologist, or other professional, or when shown through repeated behaviors are necessary so that other faculty is aware of the problem. I guess I agree with both of you.
Let's clarify...I'm not negative on education. I believe that knowledge is power and education is good. The schools do a great job with targeting all kinds of kids but some still fall thru the cracks and those are the ones to which I was referring. Not every kid fits in a neat and tidy box. I had two brothers who were those kids. Mechanical wizards but they didn't learn by reading...they learn by doing and they were labeled with a learning disability. That's not right. I think that there is much money at the federal and state levels that are being mishandled that should be funneled down to our local districts. Lack of funds hinders education.
Leah, I didn't mean that I thought you didn't believe in education, just that you often make negative comments on education-related stories.
"They are labeled and marginalized simply because the school system cannot seem to find a way to teach them in a manner that can be measured."
Just to clarify on this issue- the school does not just get to "label" someone because they perform better on an authentic assessment than they do on a standardized assessment. For a student to be identified as needing extra assistance ("stuck in the resource room" is how I believe you put it, Leah), the school actually works with the AEA to develop an Individualized Education Program. Education has evolved over time- believe it or not, kids are not just labeled, the school actually develops a form for each of these individuals to insure that their needs are met through test adaptations, reading accommodations, math accommodations, or whatever it may be.
However, I do agree on one point (believe it, or not!)- lack of funding is a major issue- it ends up leading to unnecessary blame being placed on schools quite often. As with anything- it would be much easier if more money were available.
Thank you Amy for such a fantastic article about Autism! Dylon is AMAZING! I am also a parent of a 17 yr od son on the Autism Spectrum & a junior at Spencer. In fact, our sons have been friends since you moved here, our daughters by chance have been friends nearly that long too! I am also PROUD of my son and his accomplishments and his future goals! He may have some bumps because of his challenges, who of us don't have bumps in life? I like to think that he will accomplish some amazing things in spite of, or perhaps because of his "label" of autism. I have always felt that it is both a blessing and a challenge to have a "special needs" child. I have met some amazing people because of it, including you once Amy. We struggled for years with what my son acted like. When I finally got the answer I was ready to crow from the rooftops! It wasn't just me! There was a name for this! There were options! I would never consider whispering behind hands about what we have dealt with, I told my son from the 1st minute we knew a name for it! Instead of judging those you don't act as you think they should maybe you should step back and consider that they see life through a different lense than us! I do think we all owe a bit "THANK YOU!" to all the school staff (especially Spencer for me) and AEA people that have gotten me through those days that I thought would never end. They are the ones who helped me see what is possible in spite of this challenge! My son doesn't see himself as "special needs". He sees himself as "Autisic" and an amazing & proud person because of it! He says that it allows him to see things in a better way than you or me. He has BIG plans for the future and I am going to do everything possible to help him get there! Food for thought, where would be be without labels in our world? Bill Gates of Microsoft is "on the autism spectrum", where would we be without him?
Stand proud with us parents of "autism spectrum" parents Amy! Our kids are amazing!
For anyone dealing with any Autism Spectrum disorder or with a family member with any level of this disorder. We have a support group in NW Iowa available! We meet every 3rd Monday night from 7:00 - 8:30 PM at the Hope Reformed Church is Spencer, IA (the corner of W 9th ST & Grand Ave) in "The Well" room. This is very informal and at no cost to anyone interested. We are a great group of friendly parents with all levels of functioning autisics. Daycare can be available on request at no cost. If you have any questions please find us on Facebook. (Autism Support Group - Spencer, IA area). Also you can contact Mrs Heissel @ the Spencer High School & she can put you in touch with me. Hope to see some new faces there! Our next meeting with be Monday, May 17th!
Thank you so much for posting! I had no idea about the support group at all! I will hook up on Facebook. I would really like to start coming to the support groups, especially with what's happening at school this past couple of weeks with Dylon and of course concerns about after - school.
C.J. -- I'm not seeing the autism support group on Facebook. If you don't mind, could you either post a link here, or friend me on Facebook, or both? I'd really appreciate it. I had never, ever heard of anything like that here in Spencer and I'm so relieved we do have that here.
Try this link for the autism support group's Facebook page: http://www.facebook.com/group.php?gid=23...
By the way, thanks for posting this blog. It's always good to know we're not the only ones dealing with these issues.
Thanks Damon! You are the best! I certainly hope we can get the word out that we have this group! We are informal and welcome new faces anytime. Any connection the to spectrum is welcome. No bashing is our one very firm rule though! hope to see some new faces at our May meeting!
My aunt had a son at 40 (or maybe after) and he is autistic. They refused to have him tested because "there's nothing wrong with our boy" even though he wasn't walking until after turning two and he did not start talking at all until after 3. At one point my grandma (before she passed last year) lectured my aunt, "You need to work with him on this stuff. You know what we went through with you and your sister" because they also had some physical and mental barriers. Once they finally got over their pride and had him evaluated, he started making progress just as my twin aunts had. Not over night, but he started going to special classes and having sessions with specialists and whatnot. I think he's almost six now and has improved so much. It is still a challenge, especially when he acts out violently toward my aunt some time, but my uncle's discipline can normally keep that in check. I am a firm believer in getting kids tested if they seem to have developmental problems early on and then working, working, working with them as much as possible. I really cannot emphasize enough it's about being educated and taking action to help autistic children become everything they can possibly become!