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Tips for Teaching Essential Independence Skills

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by Patricia Romanowski Bashe, MSEd, BCBA
Autism Asperger’s Digest
| January/February 2012

What do you think of when you hear the word independence? For many parents of children with Asperger’s Syndrome (AS) and similar autism spectrum disorders (ASDs)—pervasive developmental disorder-not otherwise specified (PDD-NOS) with solid cognitive and verbal skills or high functioning autism (HFA)—the word is both charged with promise and fraught with uncertainty. Though every parent knows that feeling to some extent, let’s be honest: for those raising neurotypical (NT) children, it’s different. For them this process seems to come naturallyThis is not so for parents of children with ASD. When asked to describe where they would like to see their children as young adults, most parents speak of college or job training, a career, and living on their own. Most of all they wish for their children to have the skills and supports that they need to be agents of their own lives—to be free to make things happen for themselves without an inappropriate amount of assistance from others. Achieving this requires a strong adaptive behavior repertoire, something that is not based on intelligence as we often think of it (see sidebar on page 25) and usually is not taught in school. These are the daily living skills most NT kids seem to learn “by osmosis” but must be systematically taught to many kids with ASD.

The term adaptive behavior encompasses what I call “independence skills” and includes everything from dressing, self-care, cooking, and housekeeping to how to use money, respond in an emergency, and travel within one’s community. Independence is more than just “knowing how to do something.” It requires learning not only what to do but also when, why, how much, and when to stop and start. Being truly independent means being able to recognize that a different response might be a better choice, then change course, and do what it takes to accomplish the task. Learning this demands patience, practice, and a willingness to risk and work around failure.

The Benefits of Independence Skills
It is easy to imagine what independence will look like for your child with ASD at some point in the future. But what about today? Two things we know about these skills is that they can take years to learn, and that children with ASD typically begin acquiring them later than usual. The time to start is now. The good news is that teaching independence skills also yields some important bonuses that are as important as the individual skills themselves.

  • Independence reduces the need for assistance and the involvement of others (parents, teachers). When children lack age-appropriate independence skills, they encounter two possible scenarios regularly. In the first they simply do not do what the situation calls for, be it buttoning one’s shirt correctly, answering the telephone, or jotting the night’s homework assignment in the planner. In the second scenario they manage to do them, but only with the prompting, guidance, help, or assistance of another person—usually an adult.

Our concerns about social development and peer acceptance often lead us to social skills training and highly structured social opportunities, which are certainly important. However, there is evidence that peers view what I call “the assisting presence” of adults as a major indicator of a child’s difference (Boutot 2007). We sometimes fail to see that the constant presence of an adult, no matter how kind, can discourage peers from approaching or including a child. Another side effect of such help is that the child spends more time—and gets more practice—engaging socially with adults as opposed to peers, where the experience is so desperately needed. Having basic age-appropriate skills prevents others—especially peers—from making false assumptions about your child (e.g., he is a “baby”).

Independence Tip: The goal of providing assistance should be to teach skills, not to do for a child what it is age appropriate for him to do for himself. Any intervention designed to help should also include plans for teaching the missing skill and fading the assistance. Accept that it’s better for your child to fold the towels less than perfectly than it is for the towels to be folded perfectly by someone else.

  • Teaching independence skills the right way bolsters self-esteem, confidence, and the willingness to try new things. Studies have shown that the most effective praise specifically identifies what the child did to achieve the goal, not the possession of an inherent talent or ability (Bronson & Merryman 2009). Children who are “smart,” “creative,” or “talented” know that these are aspects of who they are over which they have no control. When typical children were praised for things they did not control, they became less confident and more aversive to risk. On the other hand, children who were praised for things they did control—their effort and the concrete results of their work—applied more effort in future tasks and were more willing to take risks.

Children who are indiscriminately praised for things like “being smart”—but not given the skills or opportunities to garner compliments for skills in other realms—are left with the erroneous impressions that “being smart is enough” or that “intelligence” is the most important asset they possess. One ironic result is that these kids feel even worse when they realize that they cannot do the simple things that peers they consider less intelligent do easily.

Independence Tip: Be your child’s greatest cheerleader, but make sure that you cheer for the right play. Make your praise behavior-specific (i.e., identify what your child did) and be sure to mention the skills applied in the process, not just the product. “Good job” and “You did great” blend into the sonic wallpaper, especially since kids with special needs hear these dozens of times a day. Be enthusiastic and descriptive: “Hey, you really focused and took your time putting away the groceries,” or “Thanks for remembering to put all of your school stuff in your backpack tonight so we don’t have to worry about it tomorrow morning.” These comments recognize the aspects of a task that are typically more challenging for someone with an ASD and—most important—that he or she can control.

  • Independence provides natural reinforcement because it feels good to feel good about yourself and what you do. Children with special needs often inhabit environments that are artificially rich with reinforcement—from praise and high fives to tokens and more tangible rewards. This is neither good nor bad, and it is usually necessary for valid reasons. However, growing up, they will encounter situations where such reinforcement is either unavailable or inappropriate. For example, a fifth grader has grown accustomed to five minutes of computer time every period. But then he moves on to middle school, where accessing this reinforcement reduces learning time and sets the child apart in the eyes of peers.

Independence Tip: Expanding your child’s independence skill repertoire—and providing behavior-specific praise—means that there are other, more age-appropriate ways to access reinforcement. In the case of the fifth grader example above, it could be handing out papers to classmates, taking a note to the principal, or joining classmates in a small clean-up project.

  • Independence increases opportunities to focus on more complex concerns such as socialization, school or job responsibilities, and handling the unexpected. We know that socialization, managing the “hidden curriculum” (the social rules we all learned without ever being actively taught), and dealing with surprises are difficult for kids with ASD. There is no simple shortcut to developing these skill sets. At the same moment “higher order” social-skills deficits and independence-skills deficits collide. It may be difficult enough for your eight-year-old daughter to follow her peers’ happy chatter before going out to recess. Why add to her burden—and leave her to be the last one to get to the playground—because it takes her three times as long to button her coat and put on her gloves? Or because she needs the teacher to help her? Rather than being separate from social skills, independence skills actually provide a foundation for them and increase access to the people, situations, and places your child wants to be.

Independence Tip: When it comes to how smoothly your child’s day goes and how easily he can access the experiences he wishes to have, the little things really do mean a lot. Resist the temptation to overlook teaching basic independence skills because you (or someone) can help or because your child is not yet involved in situations where having these skills would be expected. Most of the independence skills children need can be taught successfully at home by parents using scientifically derived strategies, based on applied behavior analysis (ABA). These focus on positive reinforcement, approaches designed to fit how kids with ASD learn, frequent and correct practice, and consistency.

  • Independence increases chances for future success in all aspects of life. While awareness and understanding of ASD have grown immeasurably in the past decade, the basic requirements of achieving a happy, satisfying life have not. “The three things that we want our children to do in life are the things that adults [with ASD] tell us that they want to do in life,” says Dr. Ami Klin, chief of the Division of Autism and Developmental Disabilities at Emory University School of Medicine. “They want to live independently. They want to have a vocation, a profession that can give meaning to their lives. And they want to have meaningful relationships.”

Independence Tip: As you think of your ten-year-old who still isn’t tying his shoes, or your five-year-old who still drinks from a sippy cup, or your teen whose self-care routine still requires your daily monitoring, think of teaching these skills as a gift to your child and his future. Using these skills regularly, and constantly learning new ones, sends your child a message that many kids with special needs don’t hear nearly enough: “You can do it!”

Patricia Romanowski Bashe is the author of The Parents’ Guide to Teaching Kids with Asperger Syndrome and Similar ASDs Real-Life Skills for Independence (Three Rivers Press, 2011) and co-author of The OASIS Guide to Asperger Syndrome (Crown Archetype, 2005).

References
Boutot, E. 2007. “Fitting In: Tips for Promoting Acceptance and Friendships for Students with Autism Spectrum Disorders in Inclusive Classrooms.” Intervention in School and Clinic 42 (3): 156–61.

Bronson, P. & A. Merryman. 2009. NurtureShock: New Thinking about Children. New York: Twelve.

Cederlund, M., Hagberg, B., Billstedt, E., Gillberg, I. & C. Gillberg. 2008. “Asperger Syndrome and Autism: A Comparative Longitudinal Follow-up Study More than Five Years After Original Diagnosis.” Journal of Autism and Developmental Disorders 38 (1): 72–85.

Klin, A., Saulnier, C., Sparrow, S., Cicchetti, D., Volkmar, F. & C. Lord. 2007. “Social and Communication Abilities and Disabilities in Higher Functioning Individuals with Autism Spectrum Disorders: The Vineland and the ADOS.” Journal of Autism and Developmental Disorders 37 (4): 748–59.

Copyright © Autism Asperger’s Digest. 2012. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.


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What Tiggers Do Best

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By Ellen Notbohm
Autism Asperger’s Digest | March/April 2013

 

Adapted from The Autism Trail Guide: Postcards from the Road Less Traveled by Ellen Notbohm (2007). For more information, visit www.ellennotbohm.com. 

“You can’t bounce the bounce if you can’t even pronounce the bounce.”

~Tigger in The Tigger Movie

“And that’s why it frequently all falls apart in middle school,” concluded the special education administrator, speaking to me as both a professional and a parent. While I have two sons, one with attention deficit/hyperactivity disorder (ADHD) and one with autism, he has one son with both, proving once again that you can always find someone with greater challenges than yours. During his time in the administrative position, he had noted that the nurturing culture embraced by most elementary schools tends to disappear in middle school. “Middle school teachers seem to want to treat their students as little adults,” he said, “And of course they are not. This level of expectation only makes things that much harder for the kids on the autism spectrum.”

The expectation of “little adulthood” hits children with autism so much harder because at its core is one of the more enigmatic impairments of autism, Theory of Mind (ToM) skills. ToM skills encompass critical thinking (classification, comparison, application), executive management (attention, planning and memory functions) and social pragmatics (perspective-taking), and they’re missing from the thought processes of most children with autism. The lack of these invisible, intangible, unquantifiable skills can be hugely detrimental to learning. Many, if not most, teachers are not well-versed in how to teach a student who lacks ToM skills, and may not even see it in a child who outwardly appears competent.

Seventh grade was indeed a difficult year for my son Bryce. He not only was riding the white water of normal adolescence, but also squarely confronting his autism for the first time and facing down the limitations it was trying to put on him. At the same time, the curriculum and assignments required an ever-increasing amount of abstract thought. More onerous than the factual aspects of world history or earth science were the confounding ToM requirements of the assignments: comparative perspective, inferential ability, generalization and reclassification skills, and the cognitive and social agility to do it all in prescribed timeframes, sometimes independently, sometimes in small groups, sometimes along with the whole class.

That’s not a strengths-based curriculum for the student with autism, and it certainly wasn’t for Bryce. Lucky it was for us the school’s speech language pathologist, Christine Bemrose, had a deep understanding of the core issues of autism and how they impacted Bryce. Their year together was challenging, but by June we could look back and see the astonishing progress he’d made in developing those skills under her guidance.

“For as many as 80% of children identified with learning disabilities,” Christine told us, “those difficulties are language-based. Students don’t always end up with a speech pathologist even though they may be struggling with reading, writing or even math. All those things that are language-based activities. Struggling with learning language, using it flexibly, understanding the abstract nature of it, being able to hold information in your head, synthesize that information, carry it over to a new setting, pull it forward in an efficient manner, make connections between things—everything kids do in academics is a language-based activity.”

Consider this an absolute for children with autism: Theory of Mind skills can be taught, and they must be taught.

When Bryce latched on to the Winnie the Pooh books and movies at age 7, what tickled him especially was “Hoo-hoo-hoo HOO! That’s what Tiggers do best!” Followed, of course, by Tigger messing up whatever the activity was and deciding that Pooh sticks, climbing trees, eating honey, etc. was not what Tiggers do best. I thought of Tigger’s fumblings as I read through an excellent chart Christine put together for Bryce’s teachers, illustrating “What Bryce does best” and “What challenges Bryce,” including suggestions for addressing those challenges in the classroom and at home. Recognizing our child’s black-and-white core strengths and using them to push into the realm of the gray is what it’s all about. Equally critical is recognizing that those strengths—things our Tiggers do best—can lull us and their teachers into assuming that they are automatically able to extend these skills to a larger context. In fact, they cannot do that at all, until they are taught. To the uneducated, Eeyore tells us, “an A is just three sticks.”

A significant factor in Christine’s effectiveness can be attributed to her devoted efforts to educate the educators, to interact with Bryce’s teachers and with me in a manner that helped us understand those deep-seated ToM issues. I’ve adapted her work here in the hopes that you see your own child or student, and be able to take steps toward helping him conquer these critical skills.

JUST BECAUSE HE CAN follow a schedule

DOESN’T MEAN HE CAN

  • create a schedule
  • easily assimilate random changes to that schedule (such as changing an assignment’s due date due to illness or inclement weather)
  • remember information that changes daily or weekly.

YOU CAN provide visual guidelines that help specify

  • the task needing to be done
  • the timeframe in which it must be done
  • the steps needed to accomplish it.

JUST BECAUSE HE CAN remember concrete facts and details (rote memory)

DOESN’T MEAN HE CAN understand

  • why those facts are relevant
  • how those facts may be interrelated
  • how he can apply facts to a larger or completely different context
  • how they may suggest further facts (inference).

YOU CAN

  • explain or demonstrate how facts and details contribute to “the big picture”
  • provide supporting visuals
  • provide opportunities to use new facts, concepts or vocabulary in new ways
  • specifically identify passages containing inferential knowledge
  • review and check for comprehension of figurative language, nonliteral language.

JUST BECAUSE HE CAN follow clear, concrete directions given directly to him

DOESN’T MEAN HE CAN understand expectations presented to the whole class or group, or that he can follow multistep directions without visual support.

YOU CAN

  • provide written and verbal prompts for necessary steps and outcomes
  • check for comprehension at each step in the process.

JUST BECAUSE HE CAN complete work independently

DOESN’T MEAN HE CAN

  • recognize when work needs revision
  • work collaboratively with others to complete assignments or tasks.

YOU CAN

  • provide cue cards or verbal prompts to check, reconsider and revise his work when necessary
  • provide structure for the activity and clarify each person’s role within a group activity. Team the ASD child only with flexible and supportive group partners.
  • always check for comprehension.

I’ve heard Tigger described as a poster child for ADHD. It’s true that Theory of Mind skills are not what dear Tigger does best, at least not yet. “I didn’t really bounce Eeyore,” he protests in a grand display of faulty social pragmatics. “I had a cough, and I happened to be behind Eeyore, and I said ‘Grrrr-oppp-ptschschschz.’”

What I think Tigger does best is maintain his zesty worldview, even when the chosen activity turns out to be more difficult or unpleasant than what he bargained for; he is always up for new experiences. This may be the most useful Theory of Mind skill of all, and perhaps it cannot be taught. Perhaps it comes naturally after we diligently teach “all of the above,” and the net result is a child who experiences success and confidence.

 

BIO

Ellen Notbohm is the author of one of the autism community’s most beloved books, Ten Things Every Child with Autism Wishes You Knew, and three other award-winning books on autism. Visit her at www.ellennotbohm.com and find her on Facebook at https://www.facebook.com/ellennotbohm. Please contact the author for permission to use in any way, including posting on the Internet.

Copyright © Autism Asperger’s Digest. 2012. All Rights Reserved. Any distribution, print or electronic, prohibited without permission of author.


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The Way I See It: Using 1950’s Parenting Methods

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 The older I get, the more I realize that I was greatly helped by old fashioned 1950’s methods for teaching children social skills. Mother had good instincts on how much to “stretch” me so I would learn. To develop, I had to be continually moved outside my comfort zone. In our neighborhood, the rules were the same at every home, and good manners were always expected.

When mistakes were made, I was given proper instructions instead of mother or a neighbor saying “No.” If I wiped my mouth with my hand, my mother would say, “Use the napkin.” The mistake made by many parents and teachers is to say “no” instead of giving the instruction. When I twirled my fork around my head she would say, “Put it back on your plate.” Today, too many people say “no” instead of giving proper instructions. In elementary school, I lapped a bowl of ice cream with my tongue. A teacher silently took it away and said, “You are not a dog.” She did not get mad, she just said it real matter of fact. Back then, manners were always taught in a calm, neutral tone.

At a young age, all the children in our family had to be party hosts and hostesses. My brothers, sisters, and I would greet party guests and shake hands with them. Unfortunately, I am seeing too many kids today who are not learning to shake hands. By age seven or eight years old, I was good at this. Even though I hated the parties, my brother admitted that learning to shake hands and being a good party host helped his career. Having these skills made it easy for him to make a good impression on his bosses at the bank and he is now a senior vice president.

In the 1950’s, all kids were taught to shake hands by demonstrating the act. I had to learn to use the correct amount of pressure and to do two or three shakes while looking at the person. Back then, young children were taught manners and social skills that are now reserved for older children on the spectrum.

Why not have the same expectations for children today? Reserve praise for a really good art project, don’t give it for normal things that are considered polite, such as saying “please” and “thank you.”

Recently I was at a formal dinner with a fully verbal 12-year-old with autism. When he started to eat sliced chicken with his hands, I said, “Use the utensils” and he did. He not only followed my instruction, he even tried some new foods! Teaching kids on the spectrum the formal social skills of the 1950’s can create a respectful child who will be respected.

 

Temple Grandin, PhD, is an internationally respected specialist in designing livestock handling systems. She is the most noted highly functioning person with autism in the world today. For more information, visit her at www.templegrandin.com.

 


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Comments

  1. Thank you everyone for your feedback! It is important to know what your ideas and thoughts are because you are the reader of this magazine. With that in mind, please be tasteful in your comments. Temple Grandin is the author of this article. We simply post it up for everyone to read. The article is simply what Temple was taught and what helped her. She is clearly stating that it is important to have manners.

  2. Nina says:

    I’m sorry but I disagree, I am recently diagnosed with autism and was raised in the good old fashioned way. Can safely say it has destroyed me. Constantly being told I’m doing things wrong and should do it another way destroyed my self confidence. I was left feeling I was a bad person for not knowing these things like everyone else. I felt broken, wrong, stupid. I became unable to make any decision for myself because I would probably be wrong. I have suffered years of depression, eating disorders, anxiety and self harm because of the way this style of parenting made me see myself. I don’t blame my parents, I love them very much. They did the best they could with a child they didn’t know was different. They saw this as the correct way to raise their children. I have taught my children manners etc but in a kind way, if they choose not to do it I don’t chastise them, I let them know that it’s their choice but it will affect the way others view them. I explain why we do things and I never tell them what they do is bad or wrong. This does not mean they get away with whatever they want. I have been complimented many times on the behaviour of my children. To me, the only correct style of parenting is one which treats each children as an individual and tries to view the world from their point of view. I want to build their confidence not destroy it. I can learn from the techniques of so-called 1950’s parenting but I will also learn from the many mistakes that were made.

  3. Dean says:

    Any article that uses “…with autism” is immediately suspect on its face.

    I am a thirty-six year-old white man who never gets a second glance in his local area, and yet the words “…with autism”, or separationist language as I call it, induce symptoms in me that are consistent with PTSD. Even describing this reaction to people makes my physical form twitch.

    So basically what we have here is more parental units writing their spurious opinions about how to treat autistic people, using language that an overwhelming majority of autistic people find offensive, and from a perspective of not being autistic themselves.

    So you will have to pardon me if I decide your advice is not worth following.

    • Lisa says:

      Dean
      You are so very very wrong in your assumptions about this author. Temple Grandin has autism. She is probably the most highly respected writer and speaker today communicating about autism from the perspective of the people who have it.

      You might find it interesting to read more of her writing. Her website address is given.

    • Chris says:

      Dean, not to argue but just to point out, this article is written not by a parent but by Temple Grandin, PhD. She is also autistic and while you may not identity with her choice of wording, that does not devalue the entire article’s validity.

      She raises very salient points, no matter how you feel about identifying as autistic. x

  4. Veronica says:

    I always amazes me and half annoys me when people compliment myself or my sons for having good manners.
    Sincere compliment: “Oh ,you’re boys have such nice manners”
    Expected response: “thank you, we try!”
    My internal response (usually;) “they better….”
    It is an expectation, not a suggestion. My 4 yr old and my 7 year old (high functioning autism diagnosis) and even my 2 yr old all say please and thank you, excuse me and you’re welcome. They also know how to properly introduce themselves including shaking hands. Some rules and expectations must not and should not be adjusted. That does not mean they should not be taught in a different way than is currently being used most often. We have become so worried about hurting feelings that we often lose sight of direction that is clear and concise.
    My 7 yr old has been having a really tough time at school lately and came home after a particularly difficult day that included talking to the principal. When I got down to it with him as to what had happened and what needed to change all he could do was go over the things he was told NOT to do…..I had to repeatedly, and in different ways ask him what he needs to do, what actions should he take. It took a very long time to help him understand that knowing what not to do and know what to do are two very different concepts. Two concepts that are not being focused on properly. There is nothing insensitive or dominating about directly telling a child what to do, as long as you are there to show how them when they need help!

  5. Kathleen Foubister says:

    The best I advice I have read/heard in a long time.

  6. Laurena says:

    Awesome article. We have tried to raise our (five) children the same way. Although, I am ashamed to admit that the handshake was one we missed. We always get compliments on how well-mannered our children are. When our youngest was diagnosed with Asperger’s at age 7, we did not change our parenting strategy in any way. All the same rules applied to him as did to the older kids. We have never let him use ASD as an excuse for bad behavior and we feel he is better for it.

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The Way I See It-Problems Learning Algebra?

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More and more questions are being asked about how to get a child to pass the high school algebra requirement. Algebra was impossible for me and it never made any sense.

Education has fads and my path through higher education was saved by the finite math fad in the mid-sixties. Finite math, which consists of statistics, matrices and probabilities, was the required course instead of algebra. With a lot of tutoring, I was able to do finite math and get a decent grade of a B.

I am really concerned that the algebra requirement is screening many bright kids out of colleges and technical schools. Algebra is not needed for careers in auto mechanics, drafting or industrial design. From many interviews with parents, teachers and individuals with ASD, there appears to be three patterns of difficulty with math. Students are

  • terrible at algebra, but good at geometry
  • really bad in all math beyond basic elementary school arithmetic
  • good at algebra and poor at geometry

I have observed students who failed algebra in high school, but were able to do geometry and trigonometry. If the school will allow it, I recommend immediately putting a student who has failed algebra into a geometry class. If school officials tell you algebra is the prerequisite for geometry, tell them the Greeks invented geometry first! You may even need to buy geometry and trigonometry books on your own to prove that your child can do other types of math.

If your child is having difficulty getting into a college or technical school, try going in the back door. Showing your student’s portfolio to the right professor just might cause barriers, like having to know algebra, to fall. If your child is gifted in art, show an art professor your child’s work. If your child can build things, proudly show a professor in mechanical engineering a robot your child has built. Don’t let your child become limited by their difficulty in math!

Recently I visited FERMI Lab outside Chicago in Batavia, Illinois. The people who draw all the technical drawings for their highly complex equipment had two years community college degrees in drafting. Silicon Valley has no algebra requirement. If you can write good code, you will get hired. They do not care about algebra.

Below are some great online resources that offer free materials for learning/teaching mathematics and computer science.

  • Quirkyscience.com
  • KahnAcademy.org
  • Udacity.com (charges a small fee)
  • CodeAcademy.com
  • Wolfram.com

Remember, you are your child’s best advocate; focus on what they can do and not on what they can’t!


 

Temple Grandin, PhD, is an internationally respected specialist in designing livestock handling systems. She is the most noted highly functioning person with autism in the world today. For more information, visit her at www.templegrandin.com.

 


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Comments

  1. You are my inspiration, I have few blogs and occasionally run out from brand :). “‘Tis the most tender part of love, each other to forgive.” by John Sheffield.

  2. Rajarshi Rit says:

    Also, the trend of day-to-day-life challenges and mathematics question-papers, ask-for only 1-type of mathematical-skills … that is, “neatly execute some steps” , such as , “calculate it”, “break it”, “fuse it”, “cancel it”, “carry it”, etc.
    But mathematics question-paper could be designed in other ways (But I’ve never seen) … say,

    “What is difference between a Variable and an Arbitrary-constant?”,

    “Could you find some similarity among Power, Root and Logarithm? Write it. ”,

    “Why a trigonometric function cannot be used as a measurement of angles?”,

    “Give example of differentiation and integration from simple, real-life. Give graphs to explain them”,

    “Why we cannot use the simple childhood-algebraic way to calculate ‘rate’ ( (final value-initial)/time ) , instead we have to take help of limit and differentiation?”

    I can assure that , injustice to some-group of students in math-exams, could be decreased (at-least), by opening some new-windows. I’m Not telling to decrease labor … in-fact telling to use more-labor, but in different ways, out of stereotypic view of mathematics.

    • Snowy says:

      A good many vauleblas you’ve given me.

      • RAJARSHI RIT says:

        Glad to see my replies are published, & some replies came. Practically; mathematics is taught in a strange way from nurseries to universities, throughout era, and only a “few” qualities are searched within students.

        Take a real-life example. A classroom, a mathematics teacher is asking question. ” (a+b)^2=what? “. probably the teacher is expecting the “normal” answer … a^2 + 2ab + b^2. Most-one probably reach to this answer by “reflex” – like lizards or dinosaurs did.

        But, is it the reality, what our reflex shows us? Now imagine, a student, sitting at a corner of classroom, looking out the window, (plausibly in the blacklist of the math teacher), speaks … “sir… how can I tell? m-a-n-y thing is possible … … like ((a+b)^2 ) +2 – 2; or even (a+b)^2 is ownself also equals to (a+b)^2 !!! ” . What the teacher will tell that kid? An attention-seeker? a joker? a disobedient? What its classmate will tell? abnormal? disturbing element? a stupid poor guy who don’t knows (a+b)^2 equals to what? That blacklisted student probably will don’t know, it was the only-one who really “labored” to reach the answer & have reached to a truth.

        A matter-of-fact is, many people , having good academic results and confident life and profession(including teaching), don’t perceive how blind they’e. They can (for example), proceed learning & teaching Calculus without knowing what “differentiation” and “integration” physically mean. They can solve big problems on limit, & even set-theory , without knowing the “things” about they are dealing about. In other-hand, some who are actually Not-blind,(So they can understand they’ve understood nothing at end of class), cannot achieve good academic results, & if somehow they achieve an entry to higher-studies, they’ve to commit a life detached from the “true science”. (I don’t know the scenario in foreign-countries, but it is the situation in my surroundings).

  3. Rajarshi Rit says:

    I agree absolutely.
    I could-not perform simple mental calculations (such as market calculations) and algebra; was somehow-better in geometry, set-theory & mathematical logic ; until the mathematical expressions don’t get big.
    Throughout my school-life, teachers gave me strange explanations, such as “lack-of-confidence”, “fear-of-math”, “lack in practice”, etc. & all of these explanations were absolutely false. But no-one believed that.
    Even-more strange thing happened many-times, when I asked teachers, some questions demanding intense thought in mathematics or physics, they claimed that I’ve stolen these ideas from some books or magazine or such, and claiming them as my own-question. One main reason behind such suspicion, was, if a boy cannot perform simple mathematical problems, how can ask so-much “deep” questions.
    Later-on, I realized, those people are much better than me in maths (better to say “normal”-in-maths), are not necessarily logical. They move the x-s and y-s just like coins or rubbers- & they are blind about the “actual-nature” of the mathematical terms. They have only one-skill, that is, amazing ability to memorizing and executing rules (may be some mathematical rule, or some social rule). From their toe-nail to head-hair, and from gold-nib pen to office-chair … they can “tag” unreal significances, & can memorize and execute without any mistake. They simply do-not feel an internal need to justify all rules with intuition.
    On other-hand, there exists, (the-few maybe, I don’t know), peoples, who are poorer in math than normal- but very-much logical, visual and intuitive. But they cannot utilize their full-potential.
    I’m not telling math is any bad-thing. ( In-fact if someone feels problem with maths in daily-life/cannot take full-flavor of study-subject, the person should be separately trained for mathematics); But I’m telling, the popular thinking-mode in maths (practice-building some mental-calculators within brain) is bad, and it is a biological version of calculator-dependence. It is also very bad to using maths as the selection-“threshold” in all-the competitive exams and study-courses. In all normal schools , even in higher-education science-stream including physics, chemistry and biology; separate time should be provided, so that students having brilliant intuition but poor mathematics performance, could train-up themselves with mathematics in their way.

    I just think, Dr. Salim Ali, an ornithologist (Scientist obviously), who even did not enrolled in college just to avoid mathematics, revolutionized ornithology. If this person born on present-day, he had to complete a Master’s degree by being locked in a lots of notes, printouts, etc, then cracking poorly a Ph.D entrance exam full with lots of maths etc, and spending rest of life as a dull obedient research scholar.

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The Way I See It: Kids Must Learn Work Skills

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Temple Grandin article

 

At almost every autism conference, I have either a parent or a teacher ask, “He is 21, how do I get him to stop playing video games in the basement?” or they say “He is 18 and is in the bedroom for six hours a day playing games.” Many of these game addicts are not having good outcomes; consequently, too many are ending up on Social Security and continue to play games all day.

In my generation, most kids in middle school had paper routes or other jobs. The geeks and nerds I went to school and college with (who would be labeled ASD today) all got jobs and some even own businesses! Therefore, individuals who are completely verbal and capable of doing normal school work in most subjects can and should work.

Paper Route Substitutes

Learning work skills needs to start in middle school. When I was thirteen, mother arranged a job for me doing hand-sewing for a freelance seamstress. When I was fifteen, I cleaned eight horse stalls every day and took care of the horses. There is discipline and responsibility involved in having a job. In fact, I was proud that I was in charge of the horse barn.

Many parents may say, “But there are no paper routes today!” That might be true, but there are lots of ways to find paper route substitutes. Parents and teachers need to create jobs for middle and high school kids in the neighborhood. Here are a few things to keep in mind when teaching kids and young adults work skills:

  •     The job should be outside the child’s home. Working away from home can promote independence and responsibility.
  •     Volunteer jobs or jobs paid in cash work well for those under 16; however, as soon as the child turns 16, he should get a job in the regular economy.

Jobs for Younger Kids:

  •     Walking dogs for the neighbors
  •     Setting up chairs at a church or community center
  •     Assisting vendors in a farmer’s market
  •     Fixing computers and running virus scans for local people
  •     Helping an independent business with office duties, like filing or answering phones
  •     Volunteering as a tour guide at a museum or local historical site
  •      Ushering at church

Regular paid part-time jobs, such as a grocery store clerk, stock person or a file clerk will teach kids 16 and older the discipline of a job. If you have vocational/technical schools in your area, enroll your young adult in classes that will lead to an internship or apprenticeship. When I was in college, I did career relevant internships. One summer I worked in a research lab and another I worked with severely autistic children. I continued to go to my aunt’s ranch where I took guests on horseback rides and waited on tables.

These kids must be stretched outside their comfort zone! Teach them the skills needed to have a job, and to simply enjoy life experiences. Just last Christmas, I took my first solo ride on the New York subway. Even I have to be willing to do new things on my own.

 

Temple Grandin, PhD, is an internationally respected specialist in designing livestock handling systems. She is the most noted highly functioning person with autism in the world today. For more information, visit her at www.templegrandin.com.

 

 

 

 

 


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The Social Magic of Facebook for Adults on the Spectrum

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by Susan M. Schultz, EdD and Gloria E. Jacobs, PhD
Autism Asperger’s Digest
| September/October 2012

When Susan arrived at the 10-year high school reunion of her son Jacob, he was sitting with a group of people he had been in contact with through Facebook. On their way home Jacob told his mother that he had a good time. A few months later Jacob attended a baseball game with his mother where he was approached by a former coworker he was friends with on Facebook. His coworker sat next to Jacob, and the two of them chatted throughout the game.
For most people these two events would have been unremarkable, but Jacob is a young adult with high-functioning autism (HFA) and casual social interaction has long been a struggle. The fact that Jacob attended his high school reunion and comfortably interacted with a group of people was a huge milestone. That he was able to carry on a casual conversation was also a tremendous step forward. As a 28-year-old, Jacob’s network of friends, online and face-to-face, is now more extensive, and his interactions are more comfortable. Although some of these changes may be due to Jacob and his friends becoming more mature, Susan attributes much of them to Facebook.

Connecting Socially through Leisure Activities
As Jacob was growing up, his communication delays interfered with social interactions, and his social delays interfered with communication—creating a chicken-or-the-egg scenario. Both delays affect his ability to interact with others in ways that he desires, but Facebook has helped him achieve some of his social goals. Jacob explained how he feels:

“I try to talk to people, but I am concerned that I might say something wrong or make a fool of myself. On Facebook you are getting to know a person ahead of time before you face that barrier. It is easier when you are not actually looking at the person, trying to make eye contact, and you don’t have to keep track of what is going on. Then you might get to know them, and they will accept who you are once they get to know you.”

This is not unusual for an individual with HFA. As Jacob has shown us, one way to help individuals with HFA connect with others is through the use of leisure activities such as Facebook.
People use Facebook in a variety of ways, and Jacob’s experience shows that these different types of involvement can help increase individuals’ social interactions in ways that are most comfortable for them. For instance, after he first joined Facebook and entered his basic information with his mother’s guidance, Jacob’s Facebook experiences consisted of games (e.g., Farm Town and Farmville) and applications (e.g., iHearts), and accepting “friend” requests from immediate family. Through the neighbor feature in the games, Jacob was invited to join new games.
As he played games, Jacob read others’ posts and began making his own posts. His first posts consisted of game status updates such as “Sweet” in response to leveling up, as well as general posts about games (“to all Farmville friends if sending gifts please send me the Christmas tree gifts thank you”). He then began to comment on posts of other people with pleasantries such as “that’s interesting.” His interactions with others continue to expand, and now he occasionally posts his own questions (“Now that the Olympic games are almost over, I was curious as to what people’s favorite events are?”) or his wonderings (“I had an interesting thought over the holidays and that was why do they call both red cabbage and red onions red when they actually are purple?”).

Networking in a Nonthreatening Environment
Facebook helps people make contacts based on the education and employment information individuals enter into their profiles as well as whom a person is already friends with. These features led Jacob to connect with former friends from high school and current coworkers. He eventually branched out to individuals he knew from previous employment. Most recently Jacob moved to using Facebook Chat. This feature allows Facebook friends to exchange typed messages in real time. He also joined several sports groups.
It was his Facebook membership in his high school reunion group that resulted in his decision to attend his reunion, which was a family picnic held at a local park. Jacob was dropped off at the event and picked up five hours later. His Facebook friends welcomed him when he arrived, and Jacob told his mother that he interacted with them throughout the day. According to Jacob he also met and talked with people he did not remember from his graduating class. When Jacob was picked up, he was sitting with five of his Facebook friends. Before Facebook, Jacob had never initiated interest in such a social event. Jacob’s growing comfort with social interaction is also evident in his reaction to his Facebook friend’s approaching him at the baseball game described earlier. Jacob told his mother that he did not feel awkward during the exchange—even though he had not seen his coworker in over a year—because they were still friends on Facebook.
Jacob’s experience with Facebook shows the potential benefits for the adolescent and young adult with HFA or Asperger’s Syndrome (AS). Many of the social difficulties that individuals with HFA or AS experience are alleviated in a digital environment. Aspects of social interaction such as eye contact, personal space issues, and turn taking are virtually eliminated, and the need to read the social cues of a listener or speaker disappears. The individual’s social awkwardness is no longer a factor. The stress of sensory overload and processing verbal conversation in real time also decreases. Jacob has difficulty interacting with people in real time, but Facebook lets him engage in conversation where a time lag is socially acceptable. Furthermore, the chat feature has resulted in conversational turn taking with a variety of people he would otherwise not engage in conversation, and he is growing more comfortable with face-to-face communications with people he knows from Facebook.

Finding Common Ground
Another aspect of Facebook that supports the person with HFA or AS is special interests. Too often the adolescent on the spectrum is told that his interests are unusual. However, on Facebook an individual is likely to find a group who shares the same interest. These groups of like-minded people help the individual on the spectrum feel socially connected. For instance, Jacob has an interest in NASCAR (National Association of Stock Car Racing) and belongs to its Facebook group. By belonging to this group, he is able to engage with other people who care as much about the sport as he does.

Facebook has complemented Jacob’s personal interactions and has also increased his comfort level as he “feels he knows” the person he is interacting with “better.” Facebook has multiplied the number of opportunities Jacob has for interaction, which is something Jacob has consistently expressed a desire for. Social networking has allowed him to reach out to others for social contact in a way he finds uncomplicated and stress free. The hope is that the increased comfort level with online communication will continue to move into face-to-face interactions. Given Jacob’s experiences, online social networking holds promise for the individual with HFA or AS as a way of increasing interaction with others and taking steps toward developing meaningful relationships.

Susan M. Schultz is a former special education teacher and current teacher-educator at St. John Fisher College. She specializes in understanding the twice-exceptional child. Jacob is her oldest son.

Gloria E. Jacobs is a teacher-educator specializing in the role of technology in learning and social interaction. She is an adjunct instructor at Portland State University.

 

Copyright © Autism Asperger’s Digest. 2012. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.


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The Search for Autism Triggers

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The Search for Autism Triggers Cover photo

 ‘Pesticides and Neurosteroids Questioned at the University of California’

Two different academic departments—both at the University of California—have recently published studies that raise important questions about the role of in utero exposure to chemicals as contributors to risk of autism.

The first study involves pesticides, the second neurosteroids (a brain steroid similar to cortisone, progesterone and gonadal hormones).

Study #1:

One of the authors of the study about pesticides is Dr. Irva Hertz-Picciotto, a professor and environmental epidemiologist best known for her studies of autism. She is Chief of the Department of Public Health Service’s Environmental and Occupational Health Division at UC Davis, as well a faculty member of the MIND (Medical Investigation of Neurodevelopmental Disorders) Institute in Sacramento. The publisher of over 170 scientific articles, many of her studies have detected “autism clusters” related to various risk factors. She believes “It’s time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California.”1 (California is the top agriculture-producing state in the United States and about 200 million pounds of active pesticide ingredients are applied yearly throughout the state).2, 3

Last autumn the results of a study she co-authored were published. This study asked if pregnant women living close to agricultural pesticides in central California’s farming communities had higher rates of babies born with developmental delays (DD) and autism (ASD).4 The study was robust—there were close to 1000 participants and it covered 11 years (1997-2008). Distance from home addresses (about 1/3 of the women lived less than 1 mile from agricultural pesticide areas) and pounds of pesticides were measured and compared.

Children in the study were recruited from regional centers of the California Department of Developmental Services, other clinics, and general outreach. All children were administered the Autism Diagnostic Observation Schedule (ADOS)—considered the gold standard and used with all ages, and their parents were given the Autism Diagnostic Interview —revised, to either confirm their diagnosis or reclassify them. Children without a diagnosis were also given the Social Communication Questionnaire (SCQ) to rule out ASD.

The researchers found:

  • Proximity to pesticides during gestation was associated with a 60% increased risk for ASD.
  • Four specific pesticide chemicals were studied. Chemicals seemed to have different effects depending on the specific trimester of pregnancy.
  • The most commonly applied chemical (chlorpyrifos—see below) was found to produce greatest risk in the 2nd trimester. When women lived near fields treated with chlorpyrifos their children were 3.3 times more likely to have autism.
  •   The second most common chemical—pyrethroid—was found to most increase risk either immediately prior to conception or in the 3rd trimester of pregnancy. Application of pyrethroid just prior to conception meant an increased risk of 82% and during the 3rd trimester, the risk was 87% higher.

A few words about pesticides: simply put, they are used because they block certain nerve functions in insects, thus yielding greater volume of viable (not infested or damaged) crops and increased profit for farmers, processors, and distributors.

The most commonly applied chemicals in the study—chlorpyrifos—used since 1965, and applied to at least 60 different crops, have been known for years to sicken farm workers. Traces have been found in our waterways. It was banned for home use in 2001 after being linked to neurological effects in children. In 2012 the U.S. Environmental Protection Agency also restricted its use around schools. In 2014 The EPA announced only trained and licensed professionals with county permits could use the chemicals. These restrictions are anticipated to be in effect by the 3rd quarter of 2015.5

The second most common chemicals studied—pyrethroids —are often thought of as safer, as they are frequently confused with pyrethrum, a naturally occurring mixture of chemicals found in some chrysanthemum flowers. Pyrethroids, however, are manufactured chemicals designed to be more effectively toxic and to last longer in the environment. Also, in their final, formulated product form, they are usually mixed with solvents, which can increase toxicity. They have been identified in California water bodies adjacent to urban/residential areas.6

Study #2:

This study, conducted by several researchers in veterinary and human medicine, led to the question of whether levels of neurosteroids during gestation or in the blood of newborns can increase the risk of autism.

There is a horse disorder, known as neonatal maladjustment syndrome, which has long puzzled horse owners and veterinarians. Foals affected by this disorder appear detached, have no interest in nursing, fail to recognize their mothers, and generally isolate themselves away from other animals. These foals are born with high levels of neurosteroids in their blood, whereas foals that readily interacted with their mothers have normal neurosteroid levels.

The behavioral similarities to children with autism are striking.

For years the syndrome was attributed to lack of oxygen during the birthing process. But University of California at Davis Veterinary Medicine staff—including Monica Aleman, Associate Professor of Medicine and Epidemiology, Isaac Pessah, Professor of Molecular Biosciences, and John Madigan, Professor of Medicine and Epidemiology—began searching for other causes, noting that most foals with the syndrome survive with no lingering health problems that would be expected from insufficient oxygen.7

One of their primary suspects was a group of naturally occurring neurosteroids, molecules key to sustaining pregnancy by keeping foals calm in utero. In humans, these chemicals are thought to affect moods, stress levels, socialization, sleep, information processing and memory and risk of convulsions.8

The researchers found it significant that foals born via cesarean section or who had unusually rapid births were especially prone to experience the syndrome. Their theory is that the intense physical pressure of exiting the birth canal (during the second stage of labor) is an important signal that tells the foal to stop producing the neurosteroids. Without this “stop” signal, higher levels of neurosteroids remain in the body after birth.

The behavioral similarities of the foals with the syndrome to human children with autism may have scientific basis. Neurosteroids are also emerging as potential risk factors in human autism. A 2013 study in Poland found autistic children tested at ages 3 and 9 had significantly higher salivary concentrations of steroid hormones.9

They suggested that salivary levels may serve as biomarkers of autism and may be useful for monitoring progress of therapy.

Temple Grandin has written about her childhood craving for deep pressure in order to calm herself. She eventually designed a box for this purpose. It was patterned after cattle squeeze chutes she saw at her aunt’s ranch.10

Professor Madigan at UC Davis has now similarly developed a squeeze technique for newborn foals exhibiting neonatal maladjustment syndrome. He intervenes just moments after birth in the approximately 5% of foals who are born emotionally detached from their mothers and who often attempt to move to a corner and then just stand there.

Madigan ties a soft rope harness around the foal’s body and gently squeezes it to apply pressure. The foal tends to drop over asleep. After several minutes of pressure, the harness is released, and the foal awakens. It is generally no longer detached, instead seeking its mother to interact and feed!

The UC Davis Department of Veterinary researchers have also infused healthy neonatal foals from healthy mares with neurosteroids to see if the syndrome could be induced. They found that infusion resulted in neurobehavioral alterations like those of neonatal maladjustment syndrome, though they were short lasting. Infusion was also associated with measurable concentrations of progestagens (a hormone that binds progesterone).

Conclusions:

Both of these studies raise reasonable questions about the role of environmental factors as risk factors for autism.

Clearly pesticides produce neurological impact. Whether they can directly or partially trigger autism is a valid question that deserves the continuing attention of legitimate researchers.

Chemicals in our bloodstream also obviously produce neurological impact and it’s likely their impact changes across situations and individuals. Currently many research projects are being conducted on the relationship between autism and the levels of numerous endogenous chemicals in pregnant women, newborns, and young children.

Other studies look at the risk of recurrence of autism in a given family and seem to confirm earlier studies, including twin studies that find up to 90% of autism is genetic rather than environmental.12, 13

It’s a complex subject. Autism is not a unitary condition—thus the term autism spectrum disorder. Causation is likely similarly multifaceted. There may be hundreds or thousands of factors, both genetic and environmental, and they may overlap in ways we don’t suspect.

There may also be missing heritability factors, as well as underlying conditions that cause cells to be particularly sensitive to all sorts of things—viruses (during pregnancy and in a newborn), toxins including pesticides, and endogenous hormones and neurosteroids. One current promising investigative project is analyzing data related to family medical conditions, environmental exposure history including drugs, viruses and chemicals, genetic profiling and chromosomal abnormalities, and immune function.14

The two studies reviewed here are worth our attention and both are currently being followed up by related investigations. Let’s hope autism researchers continue to stay open minded, innovative, and rigorous. As parents and professionals, we’re well served to hold ourselves to the same standards.


 

Psychologist Debra Moore, Ph.D. recently retired from 35 years of practice in Sacramento, CA, where one of her specialties was Asperger’s and HFA. She is the organizer of three LinkedIn groups: LinkedtoAspergers, Helping Hand Mentors, and Aspie Teens, and has facilitated groups for ASD teens and adults for many years. She and Temple Grandin are co-authoring a new book to be released by Future Horizons in early 2016. With a shared passion of helping people maximize their abilities and participation in the world, the authors will outline for parents and professionals effective ways to help ASD teens and adults become “unstuck” and move from isolation and apathy into meaningful, independent, and satisfying lives.

 

References

  1. Cone, M. Autism epidemic not caused by shifts in diagnoses; environmental factors likely. Environmental Health News, 2009 January 9.
  2. California Department of Food and Agriculture, 2010.
  3. California Department of Pesticide Regulation, 2014.
  4. Shelton, J., et al. Neurodevelopmental Disorders and Prenatal Residential Proximity to Agricultural Pesticides: The CHARGE Study. Environmental Health Perspectives, Vol 122, 10, October 2014.
  5. www.cdpr.ca.gov/docs/registration/reevaluation/chemicals/chlorpyrifos.htm
  6. Environmental Protection Agency website: www.epa.gov/oppsrrd1/reevaluation/pyrethroids-pyrethrins.html
  7. UC Davis: News and Information, 2.3.2015. http://news.ucdavis.edu/search/news_detail.lasso?id=10791
  8. Paul SM, Purdy RH (1992). “Neuroactive steroids”. FASEB J. 6 (6): 2311–22.
  9. Majewsha, et al. Marked elevation of adrenal steroids, especially androgens, in saliva of prepubertal autistic children.
  10. Grandin, Temple. (1996). Thinking in Pictures. New York: Vintage Press (Random House).
  11. Sandin, S. et al. JAMA 311, 1770-1777 (2014).
  12. Bolton P. et al. J. Child Psychol. Psychiatry 35, 877-900 (1994).
  13. Ozonoff S. et al. Pediatrics 128, e488-495 (2011)
  14. Autism Phenome Project (APP) and Autism Genetic Resource Exchange (AGRE): UC Davis MIND Institute. www.ucdmc.ucdavis.edu/mindinstitute/research/app

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The Role of Genetics and Environmental Factors in Causing Autism

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Autism: The Way I See It

The Role of Genetics and Environmental Factors In Causing Autism

by Temple Grandin

Autism Asperger’s Digest | July/August 2009

 

At the 2008 Geneva Center Autism Conference inToronto, Dr. Peter Szatmari, Professor of Child Psychiatry atMcMastersUniversity, presented a clear, easy to understand explanation of how genetics is involved in the cause of autism. According to Szatmari, there are three main genetic mechanisms that cause autistic symptoms.

About 7% of all autism cases are caused by major chromosome abnormalities where the chromosomes are either broken or scrambled. These abnormalities are so severe that they are visible under a light microscope.

Another 3% of autism cases are caused by major, readily diagnosable, genetic syndromes such as Fragile X. The other 90% of autism cases are slowly being tracked down to copy number variations in genetic code (CNVs). CNVs cannot be seen under a microscope; they can only be seen with gene sequencing equipment that can make copies of the genetic code. Genetic code is similar to a computer code. Instead of being binary with two digits it consists of millions of bits of four digit code along the chromosome.

CNVs are either inherited or may be caused by de novo mutation (not inherited from either parent). Small mistakes in copying the code can occur, such as reversing letters, adding extra sections of code, or microdeletions of parts of a section of code. This can happen spontaneously, sort of like the errors that are made when printed documents are scanned into a computer. Sebat et al. (2007) in The Journal of Science reported that random copying mistakes account for autism in families where there is only one autistic child and no autism in the parents. This accounts for another 10% of all autism cases.

In the next conference presentation, Dr. Martha Herbert, Assistant Professor of Neurology at Harvard, speculated that the so-called random copying errors may be caused by environmental contaminants that damage genetic code. She showed two slides of the state ofTexas. One slide showed the location of oil refineries and chemical plants and the other showed autism cases inTexas. When one looks at the two maps, it becomes obvious that there are more autism cases near the chemical plants.

A New View Toward Diagnosis

Dr. Szatmari explained that 15-20% of all autism cases can now be explained by the previously described mechanisms. Tracking down the cause of the other 80% will require gene sequencing 5,000 children and breaking autism down into some of its component parts instead of just diagnosing children as autistic. Three components that have already been studied are: 1) cognitive impairment, 2) language delay, and 3) abnormal nonverbal gestures. When children are classified in this manner, separate CNV problems on specific chromosomes have been found. Szatmari speculates that autism is probably composed of deficits in different brain systems that can be linked to sequences of code that control brain development. It is likely that many more components will be determined, essentially changing our view of autism as not a single disorder, but one having many subgroups of impairment. Understanding of the disorder will be better when each component is looked at separately.

Autism/Asperger and Normal Personality Variation?

I was asked to respond to Dr. Szatmari’s talk. I have learned from reading lots of scientific papers that CNVs are inherited in a very complex manner and they cannot be explained by the simple Medalian genetics you learned in high school. Major components of human personality and variation are probably explained by variations in CNVs. I think mild Asperger’s is simply a personality variant.

If all the pieces of code that created autism were removed, I predict the children would be yak yak social air heads and probably pretty unintelligent. When I wrote Thinking in Pictures in 1995, I wrote that a little bit of an autistic trait could provide an advantage and too much of the trait, a severe handicap. Preventing severe autism would be a worthy goal, but preventing mild autism and Asperger’s would be a grave mistake. The world would lose many creative people who have made the world a much more interesting place.

References

Liu, X.O., Peterson, A.D., and P. Szatmari. 2008. “Genome wide linkage analysis of quantitative and categorical autism subtypes.” Biological Psychiatry, 64:561–570.

Sebat, J., et al. 2007. “Strong association of de novo copy number mutations with autism.” Science 316:445–449.

BIO

Temple Grandin is an internationally respected specialist in designing livestock handling systems. She is the most noted high-functioning person with autism in the world today.

Copyright © Autism Asperger’s Digest. 2009. All Rights Reserved.

Distribution via print means prohibited without written permission of publisher.

 


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The Relief of Diagnosis: Autism Spectrum Diagnosis in Adults

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Cover for Article

At a recent forum for professionals who provide services to special needs populations, my friend, Jack approached a representative from our regional single portal entity. He asked what the process would be for an adult male, in his early 40s, who’d recently been diagnosed with Autism Spectrum Disorder, if that person were to apply for services.

“Well, that would never happen,” the representative said. “Autism is always diagnosed in childhood.”
“Just say that it did …” my friend tried again, “just hypothetically.”
The man shrugged. “It wouldn’t.”
“But, “ Jack stammered. “But …” His face got red and hot, his palms rubbing against the denim of his jeans. “But …” He didn’t hear what else was said, as he fled the room, unable to say what he was thinking: “But I’m autistic. And I just got diagnosed a month ago.”
My friend Jack is, in this case, a fictive amalgamation of many adults I’ve known to be diagnosed in their adult years; but the regional agency’s words are true. The startling ignorance of this regional agency’s representative is, sadly, no surprise to many of us who work with adults on the autism spectrum. While media often portrays children being diagnosed with ASD at younger and younger ages, the general public rarely hears of the surge in newly diagnosed adults.

Yet demand for adult diagnostic evaluations is skyrocketing. One estimate suggests that one in five people with autism is aged 60 or more.1 It’s perfectly reasonable to suggest that many autistic people never came to the attention of diagnostic professionals during their school years; or, if they did, they did so prior to the recognition of Asperger’s Syndrome, or the understanding that autism can co-exist with verbal ability. The percentage of adults with ASD appears to be consistent to that of children with ASD, upholding the understanding that ASD is a lifelong learning style. “Adults with ASD appear to be largely unrecognized,” states an epidemiological survey of ASD adults in the UK.2 The authors add, sadly, “To our knowledge, there are no previous systematic community surveys of adults with which to compare these findings.”

As awareness of the characteristics of autism spectrum disorder has increased throughout the popular culture, more adults are becoming aware that the characteristics of autism may well explain significant life-long experiences. These adults had been baffled when their strong educational performance didn’t result in successful, long-term employment. Difficulties maintaining close friendships, painful accusations of selfishness or emotional coldness that don’t necessarily reflect the person’s internal feelings of emotional connection may make a different kind of sense when seen through the lens of ASD. “No wonder I do this,” many adults find themselves saying.3

Scottish singer Susan Boyle described her recent diagnosis of Asperger’s Disorder as “a relief”. This is consistent both with adults I’ve encountered in my years working at the TEACCH Autism Program, and by qualitative research studies. One mother I spoke with said that if her son had been diagnosed when he was five years old, she might have been devastated, but his diagnosis at the age of 25 came as a relief. By that time, the diagnosis explained a great deal of her son’s learning style, characteristics that she’d always assumed were just his personality, or quirks. She’d had trouble understanding or explaining how he could be so intelligent, and yet have such difficulty navigating the world. “Part of (the diagnosis) was the hope it gave us that there could be ways to make his life less stressful and, hope of hope, he would find satisfaction and JOY. And now all these years later, he has.”

Relief has been used by many adults with ASD to describe their feelings upon confirming their diagnosis; yet, this feeling is only one part of the journey. Many times, learning about autism for the first time in adult years means a whole new way of thinking about one’s life and having to defend the diagnosis before you really understand what it means. The current conceptualization of Autism Spectrum Disorder is sufficiently vague that it can be easily misconstrued to mean anyone who may feel different from others, left out, shy, or awkward. When people say, “We’re all a little autistic,” what they mean is “We’re all a little human.”

Cynthia Kim’s e-book, So You Think You Might Be Autistic, is one of the best resources for adults that I’ve found. I first read Kim’s writing on her blog, Musings of an Aspie, and her book is largely compiled from writings accessible on this website. Kim’s own personal journey is here, as she learns about ASD and weighs whether or not to seek professional confirmation of her own diagnosis; and it is a guidebook for others, complete with numerous links to online resources. Her writing is clinical—overly clinical, at times, for me, referring as she does to the many “symptoms” of ASD— but compassionate. Each chapter leads with a clear title explaining the information that will be found there, and closes with recommendations for the reader.

Recommendations:

Learn more about ASD before seeking professional diagnosis: Diagnostic evaluations are usually expensive and time-consuming. If you are already working with a counselor or mental health professional, ask this person how much they know about adults on the autism spectrum, and whether they think you might be autistic. You might refer to diagnostic checklists for adults, such as Simon Baron-Cohen’s Autism Quotient, Samantha Craft’s “Females with Asperger’s Syndrome (Non-official) Checklist.” Roger Meyer, an adult with Asperger’s, has adapted Tony Attwood’s Australian Scale for Asperger’s Syndrome for adults,4 The Aspie Quiz, developed by Swedish researcher Leif Ekblad, is a popular online screening questionnaire.5 Cynthia Kim’s So You Think You Might Be Autistic includes a great checklist as well. Additional free diagnostic checklists can be found at the Autism Research Centre (Cambridge).6

Remember that these checklists are not a substitute for a formal evaluation, or even intended to be conclusive information in the process of self-diagnosis. They are compilations of characteristics drawn from a group of people who have already been diagnosed, and are often used as screening tools or preliminary guidelines to developing a shared idea of what people mean by the diagnosis. No one with ASD will meet all characteristics on these checklists and those without ASD will still meet some of these characteristics. Nothing about autism is unique to autism, and the characteristics of ASD are, after all, part of the human spectrum.

Consider the reasons you are seeking diagnosis: A formal diagnosis may be required to receive support services from existing agencies, such as the Department of Vocational Rehabilitation or other support clinics and agencies. If you do not perceive yourself to be in need of these supports, a formal evaluation may not be necessary. Many autism support groups recognize self-diagnosis as a legitimate option, and will accept you based on your own thoughtful evaluation. However, many people find it helpful to have professional confirmation of their self-reflection. If you are in search of better self-understanding, the formal diagnostic evaluation is but one step in this long process.

Seek out other adults with ASD: The autism community can be a good source of information for learning more about ASD. They may be able to provide information regarding services available to adults with diagnosed ASD, or their experiences with disclosure, self-advocacy, or their own diagnostic journey. In particular, organizations such as the Autism Self-Advocacy Network (ASAN) or The Global & Regional Asperger’s Syndrome Partnership (GRASP) may offer social and support opportunities. Groups may publicize their meetings through popular online forums such as meetup.com or Facebook. Online forums, such as wrongplanet.net, are also popular venues for adults with ASD and those considering the diagnosis, particularly those who aren’t quite ready to be public about their journey.

 

Carolyn Ogburn is a writer, musician, and an autism professional at TEACHH. She is also the co-creator (with Catherine Faherty) of TAG-Asheville, which is devoted to creating a broader definition of normal.


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The Positive Force of Parent Support Groups

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The Positive Force of Parent Support Groups

By Ann Palmer
Autism Asperger’s Digest  January/February 2014

Many need to reach out to those who share similar dreams and frustrations, and to feel supported by others with shared experiences. My friends in the autism world have not only broadened my own support system but have also broadened my son’s circle of support that I hope will be there for him throughout his life.

While I was at the beach with my family one day, a woman approached me. She nicely said, “I hope you won’t think I’m being too personal, but is that your son over there?” Eric was enjoying the beach, running back and forth at the water’s edge.

Not knowing what she was going to say about my son, I hesitantly said, “Yes, that’s my son.”

She said, “Does he have autism?”

When I answered yes, she quickly said, “My son has autism, too,” and pointed him out to me in the neighboring group of people on the beach.

We struck up a conversation and immediately had a connection that had nothing to do with the functioning level of our children, or their ages, or what therapy we used. That day on the beach we were strangers who discovered we were members of the same club.

Connecting Brings Rewards

I, like that mom on the beach that day, have always wanted to connect to others who care about someone with autism spectrum disorder (ASD). Over the 28 years that I have known about my son’s diagnosis, I have been actively involved in the autism community, volunteering with support groups locally and at the state level. My involvement with other autism families has been my therapy. Not everyone is comfortable reaching out to other parents and family members in the ASD community, especially right after getting the diagnosis. Some may need time to adjust to the news before wanting to connect to supports in the community. Parents will respond in their own way and do what feels right for them.

But many family members need to reach out to those who share similar dreams and frustrations, and to feel supported by others with shared experiences. The definition of support can be to keep something or somebody upright or in place or to prevent something or somebody from falling. Over the years, other parents and family members of individuals with ASD have definitely held me up and kept me from falling. They have inspired me and made me laugh when nothing seemed funny. They have made me feel a part of something at times when I was feeling very alone. My friends in the autism world have been there for me and my family both at difficult times and at times of celebration. They have not only broadened my own support system but have also broadened my son’s circle of support that I hope will be there for him throughout his life.

Existing Options

To discover opportunities to meet other parents or family members connected to ASD, you should first find out what is already available in your community. The clinic or office where your family member received his diagnosis may be able to direct you to a support group in your area. Sometimes there are groups that meet through the schools or through a local chapter of The Arc, an organization for people with intellectual and developmental disabilities in your community.

Starting Your Own Group

If you are not successful finding an existing group, don’t despair. You may want to start your own group! Developing a support group does not have to be a huge undertaking. You probably already know other parents or family members from your child’s school or from the therapy offices you visit. Invite people to come together at your house or meet at a local restaurant. Meeting at a community park with the kids once a month can be a great way to encourage social opportunities for the children and the parents, and it doesn’t cost anything or require much planning. If only two or three people come, that’s still okay. What’s important is that those who feel the need to connect have the opportunity to do so.

Finding support group participants. If you want to develop a larger, more formal support group, you can start by locating interested participants in your community. Invite anyone connected to ASD (parents, extended family members, individuals with ASD, and professionals) to come together to talk about the interest in the community for developing such a group. Churches, clinics, libraries, or schools may provide a free space for your interest meeting and also for ongoing group meetings. To help get the word out, develop a flyer for the meeting and distribute it in places where families go: schools, libraries, doctors’ offices, speech and occupational therapy offices. Also send the flyer to clinics and evaluation centers where diagnoses are made so new families can find out about your meeting.

Holding an interest meeting. The interest meeting will give everyone the chance to meet each other and help you learn what kind of support your community wants and needs. Provide a short survey that asks people what they would like the support group to offer. Include choices such as adult-only support group meetings, family activities in the community, or educational meetings with speakers. It is also helpful to ask how often people would like to meet and what day of the week would be best. Information you learn from this meeting will help you develop a support group that will reflect the needs of families in your community.

Organizing support group leadership. You will want to recruit others, at the interest meeting and at all group meetings, to help you with organizing future meetings and activities. The more people involved, the less work for each person! Volunteer jobs can include a communications person to notify people about upcoming meetings, a webmaster to manage the website for the group, a speaker recruiter to obtain professionals to address the group, a hospitality person to arrange refreshments for meetings, a social director to plan social activities in the community, and a designated greeter to welcome new families to the group. Support groups can fail due to leader burnout and a lack of volunteer involvement. Don’t be afraid to ask for help!

Involving and Inviting Others

Involving fathers. It may take special effort to involve fathers in your group. While there are fathers who are actively involved in support groups, these groups are typically attended primarily by mothers. If children are not included in the meetings and childcare is not provided, fathers are often the designated parent who stays home with the kids. But fathers need support, too—and have fewer opportunities to find encouragement in their day-to-day lives. Fathers may not be as comfortable talking about their child with their friends or coworkers. Meeting other fathers with a child with ASD can be extremely helpful. My experience has been that fathers feel more encouraged to participate in support groups around activities that include the kids, such as social or sporting activities in the community.

Welcoming autism professionals. The most successful support groups that I have been involved with over the years are those that include not only parents and persons on the spectrum but also professionals who work with individuals with ASD. Teachers, school administrators, therapists, job coaches, and physicians should be invited to be a part of your group. The group can benefit from their expertise and their connections. And the professionals who work hard to help our loved ones need support, too!

Inviting extended family. It is also important to encourage the participation of extended family members. Grandparents, whether living near or far away from their loved one, are often interested in learning more about ASD and being a part of a community of support and should be invited to attend.

Building a community of support is key to helping our loved ones on the spectrum reach their potential and have a successful life. As members of this ASD club, we all really want the same things for our children. We want them to be happy and safe and have a full life. And we want them to be surrounded by people who care about them. Best wishes in developing that circle of support for yourself and your loved one with ASD!

Ann Palmer is an author and presenter. As the director of chapters at the Autism Society of North Carolina, she coordinated close to 50 support groups across the state. Her book, A Friend’s and Relative’s Guide to Supporting the Family with Autism: How Can I Help? (Jessica Kingsley Publishers, 2012), is an AADigest top pick to read when your child is diagnosed with ASD.

Copyright © Autism Asperger’s Digest. 2014. All Rights Reserved. Any distribution, print or electronic, prohibited without permission of author.


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Comments

  1. Kat Moncol says:

    Ann,

    Loved this article and shared it with our followers at Tasks Galore. As you and I both know, we can not survive without the support of other moms, dads, and familes! Let’s keep sharing this worst kept secret to the world :-)
    Cheer,
    Kat Moncol

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