What Do Federal Laws Say about Bullying?

By Vaughn K. Lauer, PhD
Autism Asperger’s Digest March/April 2014

No Child Left Behind

This brief review of laws regarding bullying will help you protect your child’s educational rights.

No Child Left Behind (NCLB) does not reference bullying or harassment.

Office for Civil Rights

The function of the Office for Civil Rights (OCR), under Section 504 of the Rehabilitation Act of 1973 as amended, is to protect individuals from acts of discrimination against certain groups. This is carried out through a complaint procedure in which a formal complaint of discrimination is filed with the OCR. If “sufficient information” is determined to exist, a formal investigation is conducted.

On October 26, 2010, the OCR sent a “Dear Colleague” letter to the states to clarify the agency’s regulatory authority over key issues of harassment. (See at http://tinyurl.com/23gkfyc.)

Section 504 and Title II prohibit discrimination on the basis of disability. School districts may violate these civil rights statutes and the Department’s implementing regulations when peer harassment based on race, color, national origin, sex, or disability is sufficiently serious that it creates a hostile environment and such harassment is encouraged, tolerated, not adequately addressed, or ignored by school employees. [italics added]

Bullying falls within the context of OCR’s charge under “harassment” of children with disabilities. If there is dissatisfaction with the school authorities carrying out reasonable school polices, or if the policies are discriminatory, parents (or students who are at least 18) may file a complaint with OCR.

Individuals with Disabilities Education Act (IDEA)

The Office of Special Education Programs (OSEP) issued a “Dear Colleague” letter on August 20, 2013. (See at http://tinyurl.com/ov9hr2m.) It states, in part, the following:

States and school districts have a responsibility under the IDEA, 20 U.S.C. § 1400, et seq., to ensure that FAPE [Free and Appropriate Public Education] in the least restrictive environment (LRE) is made available to eligible students with disabilities. In order for a student to receive FAPE, the student’s individualized education program (IEP) must be reasonably calculated to provide meaningful educational benefit.

“Denial of FAPE” has a broad meaning; however, it generally means that if some action or lack of action (e.g., bullying) leads to impeding or preventing the child with disabilities an opportunity to be educated (i.e., “receive benefit”), then the offending school may be held accountable under the regulations of IDEA. The letter further states that:

any bullying of a student with a disability that results in the student not receiving meaningful educational benefit from the special education and related services provided by the school is a denial of FAPE. A student must feel safe in school in order to fulfill his or her full academic potential.

(Note: The terms “feeling safe” and “full academic potential” are not found in IDEA and should not be construed to be codified in the law.)

Remedies under IDEA may be executed through the following avenues.

Inform the school of the issue.
Request an IEP meeting to determine if the learning environment in which the bullying occurred necessitates a change to ensure the child benefits from the IEP.

However, if satisfaction is not obtained, parents may choose to

Lodge a complaint to the district for an administrative review (if that process is a district policy).
Forward a complaint to the state.
Request a due process hearing from the state.

Each option requires a detailed written statement of the issues and action(s) taken on the part of the child, parent, and school preceding the submission of the complaint. As noted earlier, a complaint may also be made to the OCR.

What This Really Means

OCR uses the words harassment and hostile environment to define the effects of bullying against children with disabilities. Therefore, be certain to use the words harassment, hostile environment, and child with disability in OCR complaints. If the child’s ability to “benefit” from the educational program is hampered or denied, FAPE is not being provided and the term FAPE needs to be referenced in a complaint under IDEA.

Parents should not

send a complaint to OCR or an administrative complaint to the district or state, or request a due process until after meeting with school staff to explain your understanding of the bullying offenses and to give staff the opportunity to correct the problem.
approach the offending child’s parent. This is to avoid any interactions under conditions that are not conducive to mediation where you and your child’s rights are not protected.

Parents should describe the offense to the school using words that will help them to visualize the offense noting the following:

the bully’s name(s),
the location(s) where the offense occurred,
witnesses of each occurrence, and
any actions your child took in response to the bullying.

(One condition of bullying is that it has occurred more than once, so make certain you explain each offense.)

State explicitly the emotional, social, physical, and educational effects bullying has had on your child. Explaining the educational effects of the bullying will ensure that you are addressing IDEA and OCR should you legally pursue either.

You must give the school the opportunity to resolve the situation. Note in your complaint what you have done to address the problem with the school system and the school’s response. Document all correspondences, summarizing all meetings and conversations with school personnel.

You may request an IEP meeting after you inform the school of the bullying behavior. The team should review the IEP services and settings to ensure that FAPE is protected. (Alerting the school of the bullying and calling for an IEP meeting simultaneously may cause the school to unknowingly take more than one direction on the investigation.) You will want on record either or both requests to ensure you have acted in accordance with IDEA. You can always withdraw the request for an IEP meeting should the issue be resolved before the meeting. Doing so documents steps taken in accordance with the requirements of OCR and IDEA.

In most cases the school will intervene when they become aware of bullying actions taken against a child. Although no federal legislation addresses bullying, there are approaches to take where the school fails to rectify bullying.

Whether you pursue a complaint with OCR, an administrative complaint under IDEA, or request a due process, you need to document the following:

all details of the incident as your child explains it,
what you tell the school,
their response,
any actions taken or not taken by school staff, and
records of correspondences, meeting summaries, or calls with school officials.

Do not take offense if staff respond with corrections to what you write. Take note in writing where you agree and disagree and forward that to the school. Remain focused on the facts—don’t let emotions become the issue.

Your organized records of interactions will make the respective agency’s job easier in determining the issues and steps to be taken for resolution.

BIO
Vaughn Lauer, PhD, is an educator with over 30 years’ experience in the field of special education. He is the author of the book, When the School Says No, How to Get the Yes! (Jessica Kingsley Publishers, 2013). Vaughn has developed tests for students with disabilities and created professional development strategies for general and special education personnel. He now assists parents in obtaining an IEP that meets their child’s needs. Visit Educational Learning and Training, LLC. for more information.

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Making Sense(ory) of the World

By Brian R. King, LCSW
Autism Asperger’s Digest March/April 2014

It is a true gift to feel at home in your own body. For those of us with sensory integration issues and autism spectrum disorder, it is a rare gift and one that must often be fought for every moment of every day.

Each human being comes into this world with senses through which to experience and navigate life. He’s fortunate if those senses are working together to create a cohesive picture of the world. However, there are an increasing number of children and a myriad of adults who know all too well the experience of trying to make sense of a world through senses that seem to work independently of each other.

Some senses want more input, while for the others even a little is a little too much. The challenge becomes finding the balance through which we can experience even a moment of calm and focus—so that we can participate in the flow of life instead of always feeling like we’re swimming upstream. Fortunately, there are ways we can achieve this, together.

It’s important to remember that a person’s difficulty handling an overwhelming environment isn’t a matter of motivation or endurance. Our senses work on autopilot. So telling someone to try harder is absurd. Take sweating for example. If someone is sweating a lot, does it make sense to tell him to stop it? Would you say, “Come on, cool down. You’re not trying hard enough.” It doesn’t make sense, does it? But that’s what many people expect of those with sensory regulation issues.

Increase Self-Awareness

If a child needs to sit still and he’s very kinesthetic, you can use a weighted vest. One problem with those is the premise that any pressure will do. Weighted vests don’t automatically get heavier as a child gets more stressed. So what options do we have?

It begins with self-awareness. Any person oblivious to his own needs can’t begin to seek out the strategies to meet them. I’ll explain this through an experience with my then five-year-old son Connor. Please pay close attention to the wording in this example because the wording is everything. We’re talking now about how to help increase the self-awareness of a child on the spectrum about what his sensory needs are in terms of how to self-regulate.

Five Types of Hugs

Connor was a banger and a crasher and needed a lot of proprioceptive (the experience of pressure on the body that helps the brain determine the position of one’s body in space) input to regulate his nervous system. One of the best ways for him to get this was through hugging, but, like a weighted vest, any old hug won’t do. Through talking with him in a strategic way, we established five different hugs depending on what his sensory needs were, and he’d tell us which one he needed.

He used to get his hugs ambush style. He’d run up to me or anyone else and hug their leg as hard as he could—sometimes knocking the person off balance. I used to scold him for this.

One day I asked him why he kept doing that. With a pouty lip he said, “I want a hug.” So I kneeled on one leg and gave him a hug and he hugged me tightly. I asked him if he felt better. He said, “Yes,” and ran off to play. Knowing what I know about the spectrum, I realized he needed deep pressure, and between being five and being on the spectrum, he didn’t know how to effectively get what he needed, so he just did it. So I began working to teach him the language and reciprocity behind getting a hug when he needs it. I teach parents how to have this conversation with their children to achieve the same outcome.

First, you need the right mindset. When your child does something outside the norm for you, it is critical that you understand that its purpose is to meet a need. The moment you judge it as inappropriate, you want to change it when what you really need to do is understand it. Be teachable and seek to understand the need your child is trying to meet.

The first question you must ask yourself when you experience a child doing something unique is, “Why that?” Of all the things the child could be doing right now, Why that? What problem is this child trying to solve for himself?

“Why that?” is how my wife Cathy and I began the exploration of helping Connor discover his five types of hugs. The outcomes we achieved were that he was able to communicate the hug he needed, demonstrate it, and experience how these skills will generalize. And generalization is the truest measure of the value of any skill.

Cathy initiated the process when Connor would come home from preschool. He’d get off the school bus and she’d be waiting for him at the door. The moment he reached her, he’d melt down and begin crying because he was so overloaded. She would sit on the floor next to him and say, “Okay, you seem like you’re not very happy. Can you tell me what’s wrong?” He’d say, “I don’t know.” She’d ask, “Okay, are you hurt?” “No,” replied Connor. “Do you think you’re sad?” “Yes.” “Okay, do you know why you’re sad?” “No.” “Well, is there something that I could do that might make you feel better?” “Yes.” “Okay, can you tell me?” “I need a hug,” answered Connor.

So Cathy would hug him and then ask, “Does that work?” “No, I’m still sad.” “Okay, do we need to do something different?” “Yes.” “What do you think you need?” “Tighter.” Over time by asking him specifically how he needed the hug, we developed a hug system so he has the right hug for the job, depending on how he’s feeling.

Now when he comes home, he’ll say he wants a Connor hug, which means he’s had a good day and he just wants a general hug to give him some quick pressure to calm down a little. Then he’s off and running. We also have the bear hug, which is a tighter, slightly longer Connor hug. He’ll say, “I’m done” when he’s had enough.

The dinosaur hug is for very deep pressure. Then we’ve got the fishy hug, where you pick him up, hold him tightly, and wiggle him so his legs swing. As he gets bigger, we’ll have to renegotiate that one to avoid injury! The fifth kind of hug Connor enjoys is the snuggle hug when you hold him while he sits on your lap and you both rock back and forth. It’s extremely calming and comforting for him. This type of hug gives him proprioceptive and vestibular input when he’s had a hard day.

One of the keys to this process is asking your child, “Can you either tell me or show me what you need me to do?” A nonverbal child may need to show you. However, many children won’t have any awareness of their needs. What should you do then? You offer a hug and then ask for feedback while hugging him. Ask, “Do you need it tighter?” He may honestly respond, “I don’t know.” In that case, you ask if you can make it tighter to see if it helps. When he gives you the permission to do so, you do it, hold it a few seconds, and ask, “Does this feel better?” If the child says yes, you’re good to go. You’re using both language and action when helping your child discover the strategy. You’re saying it as you’re doing it so he associates the feeling with the language. Then you encourage him to use the same language when requesting it.

Plan Ahead for Self-Regulation

With so much sensory dysregulation, it’s a struggle to find balance. Every day of my life is an ongoing concentrated effort to stay regulated, calm, and focused. Ultimately what’s required is to keep my life simple, meticulous, and predictable. Why? Because if I know exactly what I’m going to be exposed to through the course of a day (as much as possible), I can plan to avoid things that will dysregulate me—and surround myself with things that will help me stay calm and focused.

Yes, spectrumites like order and predictability, but it’s not because we’re controlling, it’s because we’re protecting ourselves from dysregulation. We just want to create a world for ourselves that allows us to maintain some sense of stability. That’s why we construct the lives around us that we do.

Watch for Sensory Preferences

Well, how do you even know what input you need? As a parent you can watch your child and see what type of sensory input he seeks and what kind he avoids. I highly recommend having an occupational therapist who specializes in sensory integration evaluate your child.

You can also tell by studying your child’s special interests. Look at how he spends the majority of his time. How does he calm down? What are the activities he chooses to the exclusion of all others? Take the child who wants to sit quietly by himself and read all day long—is this a child looking for a tremendous amount of auditory input? Is this a child looking for a lot of kinesthetic input? This is a child engaging the world through his eyes.

I do much better with an audio book than I ever do with a written one. When I try to read, it’s frustrating and exhausting. My eyes don’t track well, so I’m always losing my place. I might get through a page or two and have to read the same paragraph several times before I comprehend anything. I listen to an audio book and absorb the information like a sponge.

My middle son Aidan is very kinesthetic. For the longest time we didn’t know what he was good at. Then one day he asked, “Can I learn to crack an egg? Can I help in the kitchen?” One year for Christmas we got him a chef’s hat, and he’d wear it every time he helped with the cooking. He wanted to be the one to flip the burgers. He wanted to help. He wanted to move.

Stretch into the Fullest Life

Aidan has taught me so much about how limiting a classroom can be and how liberating it can be to be educated outside the classroom in a world where he can engage according to his strengths instead of according to what is appropriate.

He found what he’s good at and wants to do it as often as possible because doing so gives him the experience of feeling effective and competent. Working in the kitchen teaches him he has something to offer the world. In the classroom he hears, “Try harder. You can do better.” In the kitchen, activities are more concrete, completion of a task is measurable—the dishwasher was full, now it is empty—ta-da. He finds a better balance between his needs and abilities when he’s allowed to experiment with different contexts. The school system doesn’t have that kind of flexibility, but life does.

It’s important to realize that teachers are typically limited in what they’re allowed to do in their classrooms. The curriculum is standardized instead of individualized and doesn’t lend itself easily to individual learning styles. I’ve met some magnificent teachers that aren’t allowed to be as creative as they’d like to be and are actually held back as much as their students by someone else’s rules. It is helpful to teach your child strategies such as self-administered joint compressions that he can administer while sitting at his desk. Any seasoned occupational therapist should be able to teach these to you and your child. These compressions can be effective for helping your child last longer before needing a break, reduce anxiety, and even improve focus.

We now have more information about living on the spectrum than ever, especially from spectrumites themselves. Together we can find the middle ground and co-create a world that moves at a pace that allows each of us to be at our best.

BIO
Brian R. King, LCSW, ADHD and ASD Life Coach, is a #1 best-selling author, 25-year cancer survivor, and an adult with dyslexia, ADHD, and Asperger’s. He’s also the father of three sons on the autism spectrum. Brian is known worldwide for his books and highly engaging presentations that teach the power of connection and collaboration.

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Painting Big Dreams: Kevin Hosseini

By Joanne Lara, MA, and Keri Bowers
Autism Asperger’s Digest March/April 2014

“My goal is to make a living, and hopefully one day, to show my art in Paris.” ~ Kevin Hosseini

Surrounded by dozens of vibrant paintings, depicting impressions of faraway places, landscapes and seascapes, animals, bicycles, and reflective self-portraits, 19-year-old Kevin lights up while sharing his passion for painting. “I started painting when I was nine years old in the fourth grade. My tutor Colin showed me his art. I wanted to be an artist like him.”

Kevin’s “mom-as-manager” Debra Hosseini (www.the-art-of-autism.com) adds “Colin was a clinician sent by the Koegel Autism Center at the University of California at Santa Barbara to work with Kevin. Colin’s early influences show us that role models are important for our kids. Colin helped Kevin advance quickly from watercolors to acrylic to oils.” On his own, Kevin discovered he liked to add natural elements in his paintings, such as sticks and dirt, to give depth and texture to his works.

Currently a freshman at community college, and notwithstanding an impressive resume of accomplishments, Kevin has had a life that was anything but easy. When Kevin was four, he was diagnosed with autism spectrum disorder. In his early teens, he was also diagnosed with schizoaffective disorder.

With periods of psychotic symptoms including mania, hallucinations, and delusions, Kevin was traumatized daily by voices in his head. For a time, he stopped painting altogether. Devastated by his worsening condition, his family sought to help him through medications, hospitalizations, a recovery home, and other intensive interventions. But it would be years before Kevin’s condition stabilized and improved, and before he began to paint again.

“I paint every week. It feels good and fun to paint; it feels like I am expressing. Mom helps me with my art by putting the name I give my painting next to it. She helps me put prices on it.” He enthusiastically adds, “If I am having a bad day, I paint and feel better.”

While Kevin’s art connects him to things around him, connecting to people is a daily struggle. “I’m thinking college is exciting, but I find communicating hard for me because I need people to ask me questions first. I am working on this.” He tells us that he wants to have friends and go out and be like other kids his age.

We ask Kevin what he sees for himself in the near future. “In two years I see myself as a professional song writer. I’d love Moeen Sayedi Pour, an Iranian singer, or Eric Clapton to sing one of my songs. I write songs.”

Kevin’s paintings have been shown in Canada, China, Italy, Ukraine, and throughout the United States, so his goal of showing his work in Paris is hardly a pipe dream. Learn more about Kevin by visiting Kevin’s Gallery and Kevin’s Facebook Page.

BIO
Joanne Lara, MA, founder of Autism Movement Therapy, recipient of two Autism Speaks grants, was the autism expert on the Fox TV show Touch, and is core adjunct faculty at National University in Los Angeles. Lara produced the documentary Generation A: Portraits of Autism & the Arts. For AMT Certification and licensing, visit autismmovementtherapy.org.

Keri Bowers, mother, advocate, speaker, and filmmaker, is co-founder of The Art of Autism (www.the-art-of-autism.com) and owner of Normal Films (www.normalfilms.com). Her films, Normal People Scare Me, The Sandwich Kid, and ARTS, embody possibilities, disabilities, and the arts. Keri is a consultant on the “art” of transitions and skills development.

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ASD…It’s a Family Affair: 6 Tips for Professionals

By Jill Britton Scercy, MS, LMFT
Autism Asperger’s Digest March/April 2014

When you begin working with someone who has autism spectrum disorder (ASD), it is important to realize that he is an individual within a unique group. This group, whatever it may look like, is his family and they, too, deserve special treatment and consideration.

The family functions as a system, and each member is affected by the individual with ASD in his own unique way. The individual with ASD often becomes the center of attention out of necessity. Family members are thrust into a world of educational modifications, treatment options, scheduled therapies, and an alphabet soup of acronyms—this is in addition to continuing with the roles and responsibilities of typical family life!

While there is no written instruction manual for working with families due to their unique presentation, it is important to consider the following.

1. Acknowledge

Recognize the family’s uniqueness and the special child they have brought to you. Give them a chance to educate you about what is unique about their child and family. Take time to get to know and understand each family member and acknowledge the strengths that each brings to the family’s dynamic. Begin to understand the impact of this child on his family and be sure to take into account the journey the family has been on prior to the diagnosis. They may have been searching for answers for years and fighting to have professionals hear their concerns. They may have thought (or been told) that it was simply “a speech delay” and be overwhelmed by the complexities of this lifelong disorder. Or they may have little understanding of the subtle symptoms that have suddenly become a label. Understandably they are experiencing fear of the unknown, and they may be grieving for the child they thought they would raise. When sharing the diagnostic information be sure to convey the message that “He is the same sweet lovable child he was this morning before he received this diagnosis,” because many things do change for a family once they get this news.

Accept that some families may take longer to process the information you are providing, and be sensitive about overwhelming families with too much, too soon. Let each family be your guide as to how much information they can absorb at one time.

2. Validate

Take time to validate the family’s questions and feelings. Although you do not have a crystal ball, and you cannot answer all the questions about what the future will bring, you can let them know that the questions they’ve asked are ones that many in their position want answered. Listen carefully to their questions and answer with honesty and support. You can let them know that it is okay to feel sad, frustrated, and scared at times—but that they will also feel happy, excited, and proud of their child’s accomplishments along the way. At the time of diagnosis, let this family know that they have already been doing many things well and this has helped their child adapt to his unique challenges. The fact is even before understanding the diagnosis, most families know their child and understand little things they must do to make each day a little easier.

During our evaluation process, the family is interviewed by a parent consultant while the child is going through a series of assessments. When the clinical team meet to discuss their impressions, the parent report is given at least as much weight as the child interaction in determining a diagnosis. When talking with the family, it is important to validate specific behaviors and challenges they see that may not have been observed in a diagnostic setting. We often say to a family, “Although we did not observe this today with your child, we can certainly understand how difficult it can be at times with him.” Many times we are told by families that we are the first professionals to believe them when they reported certain concerns.

3. Empower

By sharing your knowledge of interventions and strategies at a level that meets their specific needs and understanding, you will be increasing the family’s ability to be their child’s best advocate at home, at school, in faith-based worship settings, and in relationships with peers and extended family members. Help them gain the confidence, which they will need for many years to come, to go to battle for their child’s best interest and to always remember that they know their child better than anyone else. Emphasize that little steps made each day can bring huge long-term results. Remind them that they are in a unique position to make a positive, lifelong difference in their child’s life. Let them know that they will encounter many professionals who suggest different options for interventions and that the family should explore options to find what feels best for their child and family situation.

4. Encourage

Encourage all family members to be a part of the treatment as much as possible. The mother is typically the nurturer, appointment organizer, and overall make-it-happen mechanism for a child with ASD. The father tends to want to “fix” things and may have a longer adjustment period to accepting the diagnosis. As the mother is busy juggling the day to day, the father often worries about the future. Siblings are the longest relationship the child with ASD will have. Yet they sometimes feel left out as their sibling is carted to many “special” appointments. Encourage the father, siblings, and extended family to also learn about the child’s strengths and challenges so they will feel more a part of the accomplishments. Point out strengths that the family has that are aiding the individual with autism. This will strengthen the family as a unit, and it will help provide the best possible outcomes.

Recently we began to work with a three-year-old with ASD. His mother and older sister also attend the sessions. During the sessions, the parent consultant spent time talking directly to the 10-year-old sister about the way the autism specialist was interacting with her brother (while watching through a two-way mirror). Later she was encouraged to join in play with him. This will not only increase her understanding of her brother but will increase the likelihood that she will practice these strategies with him at home. Professionals come and go, but an individual is blessed to have the continuity, stability, and security of family members. Help family members embrace this role.

Remember to ask about other family members. I call this the “check-in” during treatment. I will often turn to the mother who brought her child and say, “So is dad noticing the progress [child’s name] has made?” or “Were you able to share with dad that [child’s name] was able to request a toy?” I will sometimes ask, “So are there any questions that dad has about what we have been working on?” or “Is her brother asking any questions about her behaviors?” Even if the other members cannot come to the sessions, this gives a feeling that they are included and their thoughts matter.

5. Support

Offer support as you work with the family and help them connect with other families who are living with autism. There is something powerful about meeting regularly with other families who have dealt with some of the same challenges and have triumphed. Getting a pulse on the schools, private therapies, and support services in the area is also invaluable—and a support group is the perfect place to do this for many. However, a support-group atmosphere does not meet the needs of every family. I was reminded of this once when I talked to a group of professionals and parents about the importance of getting families involved in a support group. A mother of a young child raised her hand and let me know that this was not a good fit for her in her early years of understanding the diagnosis. She said that everyone tried to get her to join, and when she went she only got more overwhelmed. She preferred to seek support in a more individualized setting.

One family I was working with had twin two-year-olds, one of whom had just been diagnosed with ASD. Their mother called me one morning to let me know she was having a really difficult time. Her two-year-old kept stripping off her clothes in public, pulling out her eyelashes, and responding violently to transitioning. After a conversation on the phone about ideas to help, I offered to have her come to our office to pick up some pictures I made for her to help with transitions. I was lucky to have staff available to watch her children in the lobby while I took her back to our break area and offered her a cup of coffee where we chatted for about 20 minutes. She told me later that it was the first cup of coffee she had shared with someone in a very long time. The support our staff offered that morning helped her gain strength to make it through the day.

Once families have come to the point in their journey that they are able to, encourage them to give back to other families in the autism community (e.g., parent mentor, position in local support group). This can be therapeutic and cathartic for family members and can help the givers as much as the recipients.

6. Celebrate

Help families recognize the small as well as large accomplishments along the way, as this can give the family the strength needed to face the next hurdle. Certain goals for the child with ASD may not have been accomplished—but many have. And more than likely, incremental progress has been made on most goals they are currently working on. It can be helpful to point out the changes by giving them an example. For instance, “Wow, did you see him looking at the clinician when he needed help? Remember when he would just cry or get frustrated?”

Families need to be reminded of how far they have come. It is often difficult for a family who is in the middle of everything to see the extent of the progress their child has made over time. Discuss the progress the family has made together, and review the individual growth of each family member.

When you are a professional working with a family who has a member with ASD, remember that this diagnosis is really a part of the entire family. Each member deserves acknowledgement and recognition for their role in helping their family member be understood and integrated into the community to the best of their ability. There is no doubt that including all family members in the treatment will provide additional support and a better overall outcome for the individual with ASD.

BIO
Jill Britton Scercy, MS, LMFT, is the assistant director of the Greenville office of the UNC-Chapel Hill TEACCH Autism Program. She is a licensed marriage and family therapist and the mother of three boys, one of whom is on the spectrum.

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By Ellen Notbohm

Autism Asperger’s Digest March/April 2014

What does autism “awareness” mean to you? Better question—what does it mean to those who think autism doesn’t touch them? “Awareness” may be another one of those words I have to consign to quotation marks, along with “normal” and “typical,” or simply drop from the dialogue. Awareness was an ambitious goal ten years ago, and still is in many countries, but here in the United States it is no longer enough for me. Awareness that doesn’t result in action feels a bit hollow to me. “Yes, we understand what autism is—we are aware—but we can’t do anything about it/it’s not my job/our school, our community doesn’t have the money/we don’t have anyone in our family with autism so it’s not my problem.” A society can be as aware of autism as they are of the weather but if, like the old weather cliché, everyone grumbles but nobody does anything about it, awareness may then turn divisive and destructive, driving our children with autism farther to the edges of community.

The shortsightedness and self-interest of others remain two of our kids’ most formidable barriers. Those who still see autism as a dubious diagnosis see it as a resource-suck on schools and a lever that will ratchet insurance premiums higher as both are forced by law to serve our kids. If I had the power to force anything, it would be to include in all our discussions on education and health care for children with autism the cold hard calculation of what it will cost society through 60 years of adulthood if in childhood we do not do everything in our power to produce a physically and emotionally healthy adult who is as self-sufficient as possible.

So now when Autism Awareness Month approaches, I dream bigger. I dream of Autism Action Month. What might that look like?

My list of what I’d like to see during my idealized Autism Action Month is not “evidence-based.” It is supported by neither experts nor science, by nothing other than my hopes, pipe dreams and vision, and by my belief that we raise adults, not children, and that the journey to independence begins in earliest childhood.

1. It starts with food. Raise/allocate funding for research and outreach on feeding therapies, and for food programs and nutrition education. Too many children with autism have feeding issues. It’s a multilevel problem. The availability of food and our kids’ ability to ingest adequate nutrients is bedrock to their ability to meet their full potential. A study by Boston University’s Department of Pediatrics (2008) (reported by the National Institutes of Health) stated that young children from food-insecure households are two-thirds more likely to be at risk of developmental problems than those from households with enough to eat. Even in food-secure households, the child with autism may suffer severe lack of nutrients due to his hypersensitive gustatory system and insistence on eating only a few, often highly processed, foods. Without adequate nutrition, children can’t learn to their full potential, can’t “behave.”

2. Raise/allocate funding for sensory evaluations of classrooms, and for sensory makeovers of classrooms. Noise, visual clutter, smells, textures can make learning almost impossible for some of our kids. Sensory classroom accommodations benefit all kids, not just those with autism.

3. Restore or create Adapted PE programs throughout K–12. Adapted physical education specialists are teachers trained in making modifications to equipment and curriculum so that children with supplemental needs can participate in general education PE classes with their peers. PE can be a confusing mix of motor skills, rules and all the social complexity that goes along with the concepts of teams and competition. Physical activity is a wellness issue for all kids; for the child with autism, being able to participate with peers goes a long way toward erasing yet another distinction that may separate the child with autism from his contemporaries.

4. Create opportunities for not only participation but for leadership. Many children with autism live with a constant stream of messages telling them what they do wrong or inadequately. But all children are good at something. Creating opportunities for them to lead and teach reinforces their sense of being part of a community in which there will always be people more and less capable. Example: A child who knows his favorite book inside out can teach it to the rest of the class or to a smaller reading group or a younger class. He can lead the group in reading it, then ask questions he has written down ahead of time (with the help of teacher, therapist or parent) about the main characters, setting and sequence of events. Dozens of opportunities like this exist in a single day.

5. Curricula in independent living skills, trades. I’d like to see some brutal honesty in math requirements. The majority of high school graduates are not headed for careers wherein they’ll need advanced algebra, but all will need consumer math—literacy in salary/benefit calculations, household budgeting, savings, investments, responsible use of credit, tax preparation, how to buy a car, how to rent an apartment, how to calculate a discount. And let’s retrieve introduction of the trades from community college and bring them back to high school. Trades are necessary to society, and not every student is headed for college (or should be). Students with autism often have narrow interests but may be highly skilled in a particular area. Encouraging employment and independence through trades is every bit as legitimate as encouraging college attendance.

6. Jobs. Let’s ask employers to create one new job, even part-time, for a teen or adult with autism. We’ll provide a short workshop, online tutorial or reading links that will help them design simple accommodations that will allow the employee with autism to succeed.

7. Transition to college programs. How accommodating a college is to the student with disabilities (federal word, not mine) might be more important than whether they offer your student’s chosen major. College administration attitudes range from “this is college, deal with it” to extensive services offered. We need a clearinghouse to identify colleges more active in helping students with autism and other learning differences. Disability accommodations at my son Bryce’s college include supports such as note-taking, in-class aides, sign language interpreting and transcribing, accommodated testing, ergonomic furniture, adaptive technology, alternate forms of print (large print, Braille, audio, etc.), captioning for video, liaison services for navigating services such as financial aid/registration/housing, course substitutions or modifications. Our kids can succeed at schools that want them to succeed.

Author Walker Percy said, “To become aware of the possibility of the search is to be onto something.” Being onto something is a good start, but it’s not an achievement until it becomes something. When we convert possibility to deed, we move beyond awareness into the kind of action that makes way for our kids to take their rightful places in their communities, and for those communities to see themselves as the beneficiary.

BIO

Ellen Notbohm is 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 that have delighted and informed millions in more than twenty languages. Read excerpts and sign up for Ellen’s newsletter at www.ellennotbohm.com.

Reference

Rose-Jacobs, R., M. Black, P. Casey, J. Cook, D. Cutts, M. Chilton, T. Heeren, S. Levenson, A. Myers, and D. Frank. 2008. “Household Food Insecurity: Associations with At-Risk Infant and Toddler Development.” Pediatrics 121 (1):65–72.

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Insider: An Aspie’s Tips for Teens

By Jennifer Cook O’Toole

Autism Asperger’s Digest March/April 2014

Mr. Sporano was my sixth grade health teacher, a tricky subject he managed quite well from that third-floor classroom at Grover Cleveland Middle School. It was always artificially warm in there, I remember. Furnaces churning out dry, overly heated air into an oaken room, already full of afternoon sunlight.

And the subject matter, I’ll admit, could make my cheeks grow hot, too. Let’s be honest. The word “puberty” is almost as uncomfortable as the subject itself. I am not a squeamish, bashful girl, but that is just a seriously awkward word. There’s nothing mature or cool-sounding about it. Personally, I hear “puberty” and pretty much think acne, goofy body noise humor, and kids bragging about everything they “knew.” (Which, I can tell you now, was almost absolutely nothing.

However silly, however shy, however all-knowing anyone seemed, Mr. Sporano kept his cool. He was determined to get accurate information through our embarrassed giggles. And we were all secretly glad of it. You see, the playground was fast becoming bra-snapping, dirty-joke central where the worst thing you could be was “babyish.” Not mature enough to fill out a bra? You’d be called a “Pirate’s Dream” (sunken chest). Throw a temper tantrum or cry “like a baby”? Expect to be beat up for being “a wuss.” That weird territory between kid-dom and adulthood was—and is—well, weird, besides which, it’s full of innuendos and lies. Guys swearing to have more “experience” than they do. Girls wondering whether “nice outfit” was meant as a compliment or a subtle dig.

So, yes, every one of us was uncomfortable in Mr. Sporano’s classroom. But every one of us also really, really, really wanted to be there. Because Mr. Sporano offered us protection. Health class was defense against social humiliation—you know, the horror of being the only one who doesn’t get the lyrics to some new song or makes some accidental locker room gaffe. He was even our respite from the most awful, most embarrassing situation known to tweens or teens anywhere—The Talk. That hideous moment when an adult, who seems even more embarrassed than you are, tries to stumble awkwardly through some garbled advice that would’ve sounded pitifully lame 50 years ago.

The solution to all of our adolescent anxiety was a simple shoebox, covered in construction paper and clearly labeled in Mr. Sporano’s distinctively perfect print: THE QUESTION BOX. Students could anonymously slip in their secret queries without fear of ridicule. In fact, it was pretty much expected that when Mr. Sporano got around to reading and answering the question aloud in his bold, unwavering voice, whoever actually wrote it would laugh along with everyone else. “Can you even believe somebody asked that?!” we’d all whisper, while secretly, every one of us waited for the answer, an answer we could trust, the truth, thoroughly explained, free of goofiness and without the super-formal textbook terms.

That’s what I’m offering you now. The Asperkids Question Box: a place to anonymously ask whatever you, as a tween/teen on the spectrum, need to know and I, an (Aspie) adult, will faithfully answer. For example? Glad you asked.

“April” wants to know, “How can you tell if someone likes-you-likes-you?” In other words, how do you know if someone is just being friendly or is interested in a little-bit-more?

A successful romantic relationship must, at its core, be a successful friendship. So, that means:

It’s a two-way street: friendships are based on respect for each other and an equal give-and-take of attention from both people.

Kindness: friends like one another and try to make each other feel happy.

Perspective: friends ask questions about each other’s lives, feelings, and ideas in order to understand each other’s perspectives.

No one loses: true friends can disagree, argue, get mad, and solve problems together; staying friends is more important than proving who is right or wrong.

Things in common: friends are never exactly alike, but they usually have a lot in common (interests, activities).

Slow sharing: over time, friends gradually share ideas, wishes, and feelings that they don’t share with others.

Research tells us that a huge amount of communication is nonverbal, untaught, and lightning fast—universal, subtle messages that we Aspies easily miss or misinterpret. Our spectrum brains focus on things neurotypicals don’t heed, and we often gloss over what others think is totally obvious. So the key to what the boy you like is really thinking or whether that girl wants you to stick around is probably right in front of you, tucked into gentle hand movements and quick facial expressions.

Want to crack the body language code? Great. Remember, though, that no one sign is a reliable indicator. You’re looking for several, consistent signals. Watch people’s actions and you will never be fooled by their words.

Boys often:

stand up straighter around you (wide stance)
make a point to sit near you
smile more than usual, and make more eye contact
lean toward you

Girls often:

play with their hair
touch their face (usually lips or cheek)
lightly touch your shoulder or arm while talking with you
“catch and away,” making eye contact, then looking away or down and back again

Last, before asking someone out, know that you’ve got to establish some rapport, some conversation beyond just an introduction. And even then, taking a chance is scary. But you know what’s even scarier? Regret.

Now it’s your turn to ask. Send your Honest-to-Aspie perplexor to QuestionBox@asperkids.com. And in return, I promise you honesty, Aspie-insider insights, and privacy. Oh, one more thing. I promise you kindness…after all, the expert in anything was once a beginner. And I’m no better than you at this Aspie adventure; I’ve just got a head start.

BIO

Jennifer O’Toole, winner of the 2012 Temple Grandin Award, is an Aspie (married to an Aspie) with three Asperkids of her own! Her conversationalist presentation of useful insights has touched hearts, lightened spirits, and even led to the founding of Asperkids, LLC, a multimedia social education company. Jennifer is the author of five books, including the newly released The Asperkid’s Game Plan.

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AADigest: May – June 2014

Columns:

12 | The Way I See It - Do Not Get Trapped by Labels
Temple Grandin, PhD

15 | The Power of the Arts - Joel Anderson’s Most Amazing Future
Joanne Lara, MA, and Keri Bower

16 | Perspective - The Cat’s Pajamas: Demystifying Idioms for Concrete Thinkers
Ellen Notbohm, BS

24 | Planning to Be Social - Friendly versus Stalking
Jed Baker, PhD

26 | Insider: An Aspie’s Tips for Teens - Watermelon Syndrome
Jennifer Cook O’Toole

28 | Applied Behavior Analysis - Positive Behavior Support
James Ball, EdD, BCBA-D

36 | Teacher to Teacher - Math Supports for Younger Students
Margaret Oliver, MEd

38 | Autism Around the World - Italy
Paola Molteni, MEd, and Silvia Maggiolini, PhD

40 | Inspire - The Autism World Has Changed My Life
Rachel Silverman, MS

Features:

18 | I Feel (Sort of) Pretty
Poor grooming is career-limiting, and it will also diminish one’s social opportunities. Use these Aspie-tested strategies on personal hygiene to make a good impression.
Bobbi Sheahan

22 | Sensory-Friendly Learning in the Faith-based Classroom
Religion is the cornerstone of many families, and this is no exception for those raising a child with special needs. This article will help you gain the knowledge and confidence you need to help children succeed in a faith-based setting.
Cara Koscinski, MOT, OTR/L

30 | Creating a Relationship of Trust: Professionals and Adults with ASD
Trust is a more fragile bond for adults with ASD than for their typically developing peers. It’s my responsibility as a professional to take the first steps in creating a relationship of trust.
Carolyn Ogburn, MLA

34 | How to Hire a Special Education Attorney
By the time you hire a special education attorney, the stakes are high. How do you choose the right law firm to represent your child?
Lillian E. Wong, Esq.

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You and Me: Typical Diamonds

By Jennifer Cook O’Toole
Autism Asperger’s Digest January/February 2014

A diamond is, after all, just a lump of coal that handled a lot of pressure really well. So dust yourself off and get out into the light. You’ll be amazed at how you shine.

Spelunking. Isn’t that just the weirdest word? It makes me think of some nasty tree fungus or something. But it’s not. Spelunking happens to be cave exploration. And guess what you can do while spelunking? Why, you can sluice, of course!

Nope, that’s not a Dr. Seuss word either. Sluicing (which sounds like juicing) is an old mining technique. You fill a wire box full of dirt and silt, then you slosh it around in running water to see if you’ve uncovered anything interesting. One minute, you’re digging through muck from an underground stream—the next minute, you unearth these amazing, albeit really rough and dirty, little bits of treasure.

OK. This, you may be thinking, is all very nice, but it has absolutely nothing to do with me. That’s where you’re wrong. It’s not that I expect you to go grab a bucket and start hunting, but then again, let’s say you did. I did, last spring. Through pail after pail of North Carolina’s red earth, I picked and swirled and washed. And every batch was full of surprises. Before long, I had discovered dozens and dozens of stones: golden pyrite, silvery malachite, smoky quartz, rose quartz, sparkling mica. There were piles of them!

“We’re rich!” my son yelled. Of course, I hated to disappoint him, but none of these stones were worth much money. They were—and are—lovely. They’re also very abundant. You know: normal, typical, common. They’re everywhere. On the other hand, precious gemstones, like diamonds, rubies, sapphires, are very rare. That’s why they cost so much. If folks could dig them up in their own backyards, who would need a jeweler? Being extraordinary is what makes them valuable. And all we had was a bucket full of normal.

Here’s where we get to you and me. Our brains operate in a way that is less common, a way that is called “autism spectrum” or “Asperger’s Syndrome (AS),” and it’s literally built into our hard-wiring. An AS label isn’t good or bad. It’s a description of our shared experiences. For example, you and I easily notice things others miss. We also miss things others easily notice. We feel emotions differently and sense the world differently. We think and fear and love and learn in ways that typical minds don’t. The fact is, in many (though not all) ways, we are not common.

I understand wanting to fit in. To blend in. For it to be easy. To not worry so much about “belonging.” Then again, I wonder if anyone really would be content being totally typical. Who chooses a hero “because he is so normal”? Who gets a compliment or wins an award or even lands a job by being run-of-the-mill? No one. That’s because normal is an illusion; it’s a role played by many but lived by none.

Look, you are in your own head 24 hours a day, 7 days a week. You know every mistake you make, every doubt you have, every insecurity that wears you down. Dating, acne, the right way to stand or smile or dress for a party—normal people don’t overanalyze all of this craziness, right? Wrong. Typical people don’t feel normal a lot of the time, either.

Since I’ve been out of high school, I’ve made some discoveries. It turns out that the most offensive bigot in our class was actually being beaten nightly. He was trying to look tough at school to earn some respect at home. The tough, burned out kid who made fun of me for being a “dictionary brain” was dyslexic. She’d have loved to worry whether she was going to get an A or A+, instead of worrying if she’d even graduate. What was normal for me was impossible for her.

And that’s the key. If by “normal” we mean “common,” then it turns out, it’s pretty normal to feel like you don’t fit in at all. Everyone has strengths. Everyone has challenges. And everyone has behind-the-scenes fears that others never see.

Now don’t get me wrong. Yes, some people do have an easier time naturally “playing well with others.” That’s an inborn talent. And envying others’ abilities only wastes the time you should be honing yours. Are you a gamer? Personally, I stink at pretty much every video game I’ve ever tried. So if Minecraft is your thing, you definitely have some skills that I don’t. That’s OK. On the other hand, I can dance like nobody’s business. Maybe you avoid dance floors like the plague and seriously believe you might die of either fright or embarrassment if you suddenly got stuck in a spotlight. That’s OK, too. However, not being a particularly good gamer doesn’t give me an excuse to avoid trying. Being terrified of dancing doesn’t mean you get to hide on the sidelines. At some point, you have to get in there and say, “You know what? Who cares if I look ridiculous? I just wanna have fun.”

Common is a relative experience. It’s all about the surroundings. Whatever differences, talents, or challenges you experience from being on the spectrum are, well, pretty typical. I get you. So if you need to feel normal, hang out with me. We’re both Macs in a PC world. Distinct. Innovative. Logical.

If you don’t mind getting your hands dirty, think of this whole growing up thing as spelunking and sluicing—only you don’t have to hunt for anything “extra”ordinary. It turns out, you already are the discovery. You already are the treasure, as natural and as precious as a jewel. A diamond is, after all, just a lump of coal that handled a lot of pressure really well. So dust yourself off and get out into the light. You’ll be amazed at how you shine.

BIO

Jennifer O’Toole, winner of the 2012 Temple Grandin Award, is an Aspie (married to an Aspie) with three Asperkids of her own! Her conversationalist presentation of useful insights has touched hearts, lightened spirits, and even led to the founding of Asperkids, LLC, a multi-media social education company. Jennifer is the author of five books, including the newly released The Asperkid’s Game Plan: Extraordinary Minds, Purposeful Play…Ordinary Stuff.

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Sensory-Friendly Learning in the Faith-based Classroom

By Temple Grandin, PhD
Autism Asperger’s Digest May/June 2014

One of the big problems with an autism (ASD) diagnosis is that it has now been changed to a broad spectrum with a wide-ranging degree of abilities.

An autism diagnosis is not precise like a diagnosis for tuberculosis. I can get a lab test for diseases such as cancer that is very definitive. This is not true for autism. A diagnosis for autism is a behavioral profile based on a manual published by the American Psychiatric Association called the DSM (Diagnostic and Statistical Manual of Mental Disorders). The behavioral profiles in this manual are based on a combination of scientific studies and the opinion of a panel of expert doctors who debated in a conference room. When Richard Panek and I (2013) worked on our book titled The Autistic Brain, we reviewed the entire history of the DSM. Since the 1950s and 1960s, the diagnostic criteria for autism have changed dramatically. When all the changes made during the last sixty years are looked at side-by-side, it is rather shocking.

In 1980, a child had to have both speech delay and autistic behaviors to be diagnosed with autism. In 1994, Asperger’s Syndrome was added where the child is socially awkward with no speech delay. In the new 2013 DSM-5 (American Psychiatric Association), Asperger’s Syndrome (AS) and PDD-NOS (Pervasive Developmental Disorder—Not otherwise specified) were removed. These labels are now all merged into a broad autism spectrum disorder (ASD). There is no longer any requirement for speech delay. Taking out speech delay makes the DSM-5 more vague than the old DSM-IV. Some scientists do not consider language delay as a core symptom of autism because language delays and speech abnormalities are so variable.

For a person to be labeled with ASD, the DSM-5 requires that symptoms must be present in early childhood, but the age of onset is no longer defined. The DSM-5 whittles symptoms down to social and behavioral. The main emphasis is on social abnormalities inherent in the disorder such as deficits in social interaction, reciprocal communication, and developing and keeping relationships with friends. In addition, the child must have two out of four of the following: repetitive behavior, adherence to routines, fixated interests, or sensory problems. Studies have shown that 91 percent of individuals with an AS or PDD-NOS diagnosis will still qualify for an ASD, DSM-5 diagnosis. The DSM-5 also created a new social communication diagnosis, which is basically the social problems of ASD without the repetitive behavior, fixated interests, or sensory problems. To state that this is not autism does not make much sense because social deficits are a core autism symptom.

Autism Is a Huge Spectrum
One of the big problems with autism (ASD) diagnosis is that it has now been changed to a broad spectrum with a wide-ranging degree of abilities. When children are really little, age 2 to 5, most experts agree that many early educational treatments greatly improve prognosis. When I was three, I had no speech and all the typical autistic symptoms. ABA-type (Applied Behavior Analysis) speech therapy and turn-taking games made it possible for me to be enrolled in a regular kindergarten at age five. Rebecca Grzadzinski, Marisela Huerta, and Catherine Lord (2013) stated, “In terms of cognitive functioning, individuals with ASD display a wide range of abilities from severe intellectual disability (ID) to superior intelligence.” Individuals with ASD range from computer scientists at Silicon Valley to individuals who will never live independently and who may not be able to participate in activities such as a shopping trip or a sports event. When such a broad range of abilities is lumped together, it is difficult for special education teachers to shift gears between the different levels of abilities. Too often a child with superior abilities is placed in a classroom with more severely impaired students. This may hold this student back and not enable him to achieve.

You Should Bust Out of the Label Silos
Each diagnostic label has its own support group meetings and books. Unfortunately, each group may stay in its own silo and there may be little communication between them. I have observed that the books for each diagnosis are almost all particular to that diagnosis. In many cases, there are kids who fit in more than one diagnosis. There are four diagnostic labels that get mixed up all the time. They are ASD, sensory processing disorder (SPD), ADHD (attention-deficit/hyperactivity disorder), and gifted. The DSM-5 now allows a dual diagnosis of ASD and ADHD. Some of these kids may be gifted in one academic subject and have a severe disability in another. Sometimes a child is labeled twice exceptional or 2E and he may be both gifted and have either an ASD, ADHD, or SPD diagnosis. When the same type of students get put in different silos, they often go down different paths. My observations at conferences indicate that about half the children who are brought to an autism conference are gifted in at least one area such as math, reading, or art. In later chapters, I will discuss the need for developing their strengths. When I attend a gifted education conference, I see the same little geeky kids going down a different, very positive path toward a career in science or art. I want to make it very clear: geek, nerd, and mild ASD are the same thing. There is a point where being socially awkward is just part of normal human variation.

I have also given talks at many high-tech companies, and it is likely that almost half the people who work there have mild ASD. One executive at a tech company told me that he knows they have many employees with AS or mild ASD, but they don’t talk about it. Many people in successful technical careers hate the ASD or AS label because they feel that it implies that they are damaged. They avoid the labels. Recently I read about a young man who had a severe speech delay, and he was “apprenticed” into his father’s physic lab. He had several scientific papers published before he was 20. If he had been born into a different situation, he may have taken a different path as an individual with ASD.

Labels Required for School or Medical Services
Schools and insurance companies require diagnostic labels in order to get services. Unfortunately, I am seeing too many smart kids labeled ASD getting fixated on their autism. I think it would be healthier for the child to be fixated on art, writing, science, or some other special interest. Too many kids are becoming their label. When I was a student, I went to school with lots of socially awkward, geeky individuals. The old DSM-IV manual would have labeled these students as having AS because they had no speech delay. Today many of my old classmates would have been labeled ASD.

Both high functioning and more severe ASD often look the same in nonverbal or speech-delayed children under age five. When children labeled ASD get older, they may diverge into two basic groups who need very different services. This highly divergent group is all assigned the same ASD label, and in poorly run programs, they are all given the same services. One group will continue to have a severe handicap with either no speech or partial speech, and the other group will become fully verbal and capable of independent living and a successful career if they receive the right interventions. They usually are able to do normal or above average schoolwork in at least one subject such as reading or math. There is a third subgroup in the nonverbal group who appear to be low functioning. Examples of this type are Tito Mukhopadhyay and Naoki Higashida who can type independently and have a good brain that is “locked in.” From both an educational and functional standpoint, ASD becomes three very different things in older children and adults. This may explain why there is so much controversy and differences of opinion in the autism community.

I am also concerned about children who should have an ASD label getting labeled oppositional defiant disorder (ODD) or Disruptive Mood Dysregulation Disorder (DMDD). In DMDD, the symptom is frequent temper tantrums in a child older than six. The ODD label can be used on children of all ages. Its main symptoms are active defiance, vindictiveness, and sustained anger. Children who get these labels need to have firm limits placed on behavior and be given choices. For example, the choice could be doing homework before dinner or doing it after dinner. Choices help prevent the oppositional child from just saying, “No.”

In conclusion, parents and teachers must bust out of the ASD silo. DSM labels are not precise; they are behavioral profiles. Unfortunately, our system requires labels to get services. Remember to think about the specific services a child needs such as tutoring in reading, or social skills training for an older child, or an intensive, early educational program for a nonverbal three-year-old.

BIO
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 Temple’s website at www.templegrandin.com.

References
American Psychiatric Association. 2013. Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Washington, DC: American Psychiatric Association.

Grandin, T., and R. Panek. 2013. The Autistic Brain: Thinking Across the Spectrum. New York: Houghton Mifflin Harcourt.

Grzadzinski, R., M. Huerta, and C. Lord. 2013. “DSM-5 and Autism Spectrum Disorders (ASDs): An Opportunity for Identifying Subgroups.” Molecular Autism 4:12–13. doi: 10.1186/2040-2392-4-12

Resources
Barnett, K. 2013. The Spark: A Mother’s Story of Nurturing, Genius, and Autism. New York: Random House.

Hazen, E., C. McDougle, and F. Volkmar. 2013. “Changes in the Diagnostic Criteria for Autism in DSM-5 Controversies and Concerns.” The Journal of Clinical Psychiatry 74:739. doi: 10.4088/JCP.13ac08550

Higashida, N., and D. Mitchell. 2013. The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism. New York: Random House.

Lohr, W., and P. Tanguay. 2013. “DSM-5 and Proposed Changes to the Diagnosis of Autism.” Pediatric Annals 42:161–166.

Mukhopadhyay, T. 2008. How Can I Talk If My Lips Don’t Move: Inside My Autistic Mind. New York: Arcade Publishing.

Tanguay, P. 2011. “Autism in DSM-5.” The American Journal of Psychiatry 168 (11):1142–1144. doi:10.1176/appi.ajp.2011.11071024

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Sensory-Friendly Learning in the Faith-based Classroom

By Cara Koscinski, MOT, OTR/L
Autism Asperger’s Digest May/June 2014

Religion is the cornerstone of many families, and this is no exception for those raising a child with special needs. There are many of us who find great comfort in reading various scriptures such as 1 Corinthians 12:22–23: “Those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor.” However, we often feel uncomfortable placing our children with autism spectrum disorder (ASD) and sensory issues into faith-based classrooms while we as parents worship with other adults.

Traditionally, places of worship are thought of in conjunction with quiet reverence and strict adherence to rules and routines. Many families may simply choose to keep their children with ASD at home because the thought of their child having a meltdown where they worship is too much to bear. Yet, as the number of children with ASD and sensory issues grows, more faith-based members are willing to learn strategies that support our children. In fact, in my own church there is an entire ministry devoted to children with special needs. If this is not the case in your place of worship, know that there are many fellow members who may be willing to help your child learn but may be too afraid to ask. It is my hope that after reading this article, parents and teachers will gain the knowledge and confidence to help our children be successful in a faith-based setting.

Preparing Your Child
It is important to prepare children for what to expect. Places of worship can become quite crowded and overwhelming. Many children with ASD have difficulty with the sounds, sights, and smells when large groups of people have gathered. Visiting the place of worship during the week when it is quiet—prior to the service—is important. Create a plan for what to do if your child gets lost or overwhelmed. Put the plan into writing or enhance it with pictures and review it with the child weekly. Be sure to take a variety of photos of the sanctuary and classroom. Create a social narrative about the type of faith-based learning your child will experience at your place of worship.

Appealing to the Senses
Obtain lesson plans from the teacher and ask for pictures and visuals to be added. There are many faith-based coloring books and printouts available on the Internet. Remember that many faith-based concepts can be quite abstract. Use felt boards or cutouts and encourage children to act out scenes from the lesson. Puppet shows can be a fun way for children to demonstrate understanding of faith-based stories. Adding sensory components to the lesson (e.g., smells of fragrant oils and herbs) can enhance the experience!

Sitting in Class
If possible, show your child exactly where he will be seated and maintain a consistent seat throughout the year. Seating options could be close to the teacher and away from obvious distractions such as windows and doors. If needed, allow the child to sit on a pillow, wiggle cushion, or beanbag chair. For younger children, it is fun to tape squares onto the carpet with masking tape. Often, having a visual cue of his spatial boundaries will provide a child with a sense of security.

Understanding Routines
Schedules and routines offer predictability and order for children with ASD; they need to know what is happening next since time is an abstract concept. Obtain a classroom schedule and rule list from the teacher. Break down the routine into a schedule for your child and allow him to check off activities as they occur.

Taking Breaks
If the class time is too long, provide break cards. Ideas for quiet sensory breaks could include wall push-ups, going to the restroom to wash face or hands with warm water, doing chair push-ups, or carrying heavy items in the hallway. Fidget toys, such as a Koosh ball or foam squeeze ball, can keep hands busy. Weighted lap pads can be inexpensively made using rice or beans in fabric. Involving the child in selecting the fabric will increase the likelihood that he’ll use the lap pad. It may be valuable to make lap pads for the entire class so that the child with ASD does not feel singled out. Many places of worship have classrooms with fluorescent lighting. Add a few floor lamps for subdued lighting. Incandescent bulbs shed a soft and gentle light. If possible, turn off overhead lighting and use natural window light.

Experiencing Music
Most faith-based services are peppered with music, which can be a trigger for anxiety. In addition, many children with ASD cannot tolerate it when someone is singing along with the music. It is important to provide warning about any music that will be included in the service or classroom. Allow the child to either exit the room or provide noise-canceling headphones. If possible, allow the child with ASD to control the volume of the music. Being a part of the music or the one in charge of the sound may be reassuring. Create homemade instruments that all children can play together, such as tambourines made from paper plates and jingle bells. Empty cans of oats can double nicely as drums. Using rhythm in the lesson is always a great idea for children who are kinesthetic (movement) learners.

Learning with Hands-on Crafts
Craft time is often a key piece in faith-based lessons. Provide a finished model for children to reference easily. Break the task down into easy-to-follow pictures of what the craft project looks like at each step. Remember that some children with ASD do not enjoy having sticky or messy hands. Provide glue sticks instead of bottles to eliminate mess and anxiety.

If a craft includes writing, it may be necessary to provide some words for the child to use. Write the words on the board or on a piece of paper placed in front of the child. Having a model of correct letter formation and spacing can significantly decrease a child’s anxiety. If handwriting is a problem, allow the child to paste prewritten words onto the craft.

Finally, having a buddy for your child is a great way to help with socialization. The buddy can be another child or an adult volunteer assigned to your child. Your child will be reassured knowing someone is there to provide help and guidance if needed.

By implementing some of the techniques in this article, children who have ASD and sensory issues can be successful in learning more about the religion that will nourish them for a lifetime. Places of worship can be an area where children—all children—learn and feel comfortable.

BIO
Cara Koscinski, MOT, OTR/L, is an occupational therapist and the author of The Pocket Occupational Therapist (Jessica Kingsley Publishers, 2013). She homeschools her two sons with ASD and SPD. For more information, visit www.pocketot.com.

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Creating a Relationship of Trust: Professionals and Adults with ASD

By Carolyn Ogburn, MLA
Autism Asperger’s Digest May/June 2014

“Our first task in approaching another people, another culture, another religion, is to take off our shoes, for the place we are approaching is holy. Else we may find ourselves stepping on other people’s dreams.” ~ Max Warren

She was quiet a long time. I sat beside her, heart in throat, but accepting any response she might offer. Then she turned to the computer keyboard that we were sharing, and typed, “OK, I will try it.”

She agreed to try because she trusts me. Trying any new thing is hard, and will always be hard. My part of the agreement is to try to make it easy for her. We will work until, together, we find a system that can support a new behavior or pattern of communication. The plan we’d made together—to use a series of pictures to organize her day, including sensory breaks—might help decrease her stress, which is associated with exhaustion and other aspects of her life for which she’s come to me, seeking relief. Or, because it’s new or because it’s not quite what she needs, our new system might increase the very things she’s trying to eliminate. “We’re just gathering data,” I’d typed earlier. “We need more information.” And she has agreed to try it. Because she trusts me.

There are a lot of skills and strategies that, as professionals, we study and share with each other. We’ve learned the diagnostic characteristics of people on the spectrum, their differences in social understanding, intense interests, reliance upon routines, and sensory processing differences resulting in unique environmental stressors. Understanding the characteristics of autism spectrum disorder (ASD) helps the professional better understand the cognitive, sensory, and behavioral needs of the client, but it leaves out one element that I’ve found to be crucial in working with adults on the autism spectrum: the importance of trust.

While ASD itself isn’t traumatic, the result of growing up with undiagnosed ASD can be. If the person on the spectrum is an adolescent or an adult, she’s usually had many years of trying to fit in with her peers, with mixed results. Memories may offer detailed histories of seemingly inexplicably failed social overtures. Over the years, ordinary sights, sounds, or tactile sensations—bright sunlight on a snow-covered bank, the clamor of a school hallway during class changes, or the unexpected throb of another driver’s sound system—may have been experienced with traumatic intensity. Due to differences in social interpretation and communication, she’s had occasions in which she’s too easily trusted someone who has undermined her trust, whether intentionally or not. She’s often experienced some combination of physical or emotional abuse. And, many times, she’s not trusted someone who might have helped her.

Educators are starting to realize the ineffectiveness of trying to use standard behavioral interventions with neurotypical children who have experienced trauma. In “Schools That Separate the Child From the Trauma” (Bornstein 2013), special educator Susan Cole says “It’s about creating a common context that keeps kids feeling safe.” And, Jane Stevens, health and science journalist and editor of ACES Too High, says “Educators understand that the behavior of children who act out is not willful or defiant, but is in fact a normal response to toxic stress. And the way to help children is to create an environment in which they feel safe and can build resilience.” [emphasis, Ogburn]

In dissertation research, Kammie Bohlken Lee (2010) found that college students with ASD identified four main qualities as being valued within their friendships: trust, support, connection, and shared interests. In other words, much like what most neurotypicals value. The difference, I’d suggest, is that trust is a more fragile bond for adults with ASD than for their typically developing peers. As with children who’ve experienced trauma, people on the spectrum must have an environment in which they feel safe in order to develop new skills.

At our next session, my client brings with her the adaptation of the picture schedule she created during the week. It’s something I never would have thought of, and yet looking at it, I see immediately how it works. I remember her words from the week before: “OK, I will try it,” and realize that she knew, even then, that what I’d offered her wouldn’t quite fit, but she hadn’t had the ability to say so. Yet she’d trusted me and brought something that would work better. “Thank you,” I tell her, then I write it down: “You have taught me more information about what makes sense for you. Thank you for communicating this to me. It helps me!”

Michael John Carley wrote that, in considering the issue of trust and ASD, “It is the partner without ASD who not only must first accept the obligation to change, but also make the greatest effort toward developing trust” (Prizant and Carley 2009). In my experience, it’s almost always the person with ASD who is working harder to maintain the relationship than is the neurotypical person; that the neurotypical partner must accept the responsibility to change is the first step in developing a relationship of trust. It is not obligatory that the person on the spectrum accept these efforts.

When I first started working with people on the spectrum, I found that each person was like her own private club: as long as I followed the rules, she was delighted to have me join her club. I still find this a useful metaphor for work I do, and the interactions I have. Every encounter is a reminder that I could, at any time, be barred from the club. I could, at any time, unintentionally act in a way that re-opens wounds of misunderstanding, violence, and abuse. The most dangerous element in any environment for a person with ASD is usually another person. And, sometimes, that person is me. Although this knowledge can be disheartening, I wouldn’t be doing my job if I didn’t keep this foremost in my mind. While both of us participate in cocreating a working relationship, it’s my responsibility to take the first steps to create a relationship of trust.

BIO
Carolyn Ogburn (c.a.ogburn@gmail.com) worked for the TEACCH Autism Program from 1998 to 2013. She can now be found at TAG-Asheville, working to promote self-acceptance and self-advocacy based on the principles of neurodiversity.

References
Bornstein, D. 2013. “Schools That Separate the Child From the Trauma,” The Opinionator (blog), New York Times, Nov. 13. http://opinionator.blogs.nytimes.com/2013/11/13/separating-the-child-from-the-trauma/?src=recg&_r=1

Lee, K. “Understanding the Friendship Processes of Individuals with Asperger’s Syndrome: A Phenomenological Study of Reflective College Experiences.” PhD diss., The College of William and Mary, 2010. ProQuest LLC. http://eric.ed.gov/?id=ED517591

Prizant, B., and M. J. Carley. “The Primacy of Trust.” Autism Spectrum Quarterly, Winter 2009.

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Insider: An Aspie’s Tips for Teens

Watermelon Syndrome

Jennifer Cook O’Toole

We’ve all been there. Trying to scoop our words up off of the floor—to reel them back in. I call it “Watermelon Syndrome.” And I, too, have suffered.

In 1987, a movie called Dirty Dancing came out, and I’m pretty sure I saw it more than 23 times. The whole story is basically about a goody-two-shoes girl who falls in love with the “bad boy” dance instructor at a summer getaway. As both a goody-two-shoes and a dancer, I was all over this thing.

But even this many years later, my absolute favorite line in that movie isn’t some perfectly-timed zinger or swoon-worthy whisper. Nope. What I love most is what Goody-Two-Shoes Girl manages to say when she finally has the chance to speak to Mr. Hot Stuff.

Scene: secret party (and therefore infinitely cooler than any she’s ever been to). Wild music (she is utterly not wild). Over-the-top dancing (she can’t dance to save her life). Then, Johnny notices her. This is a social once-in-a-lifetime moment—maybe.

“What is she doing here?” he asks with disdain.

And in a moment of total cringe-worthiness, she answers, “I carried a watermelon.”

Yep. That’s it. She toted fruit. He rolls his eyes, walks away, and instantly, she wants to die of utter uncoolness. “I carried a WATERMELON?!” she yells, slamming her forehead against the wall. Errgh!

Everyone at some point or another says the perfectly wrong thing at the perfectly wrong time. My Advanced Placement US history teacher began our year by telling the sophomores in the room that she didn’t think we had any business being there. “This class is simply too demanding,” she warned.

To which I retorted, “Just watch us.” OUT LOUD. (Even today, the surest way to get me to do something is to tell me I can’t. “Just watch me!” I still say. To myself.)

Oh, one more doozy. While on a first date years ago, the fact arose that my mom was undergoing treatment for breast cancer. “Really?” the guy nodded, trying to make conversation. “Yeah, my aunt died of that.”

Look, I know he was just nervous; he wasn’t trying to be rude. But if ever there was an example of “You don’t actually have to say everything that pops into your head,” there you have it.

Here’s the takeaway: when we are keyed up emotionally—maybe angry or frustrated, nervous, worried, even giddy or excited—we are much more likely to do and say things impulsively, without thinking about the circumstances or the effects. And the results are usually not stellar.

Let me paint a picture: say there’s a domino run set up on the floor of a hallway. If you are distracted by an annoying tag or flickering light, you don’t quite feel like you belong (like Goody-Two-Shoes Girl), or you feel pressured to make witty conversation (my date), you’re probably not going to pay steady attention to those dominoes. Odds are, you’re going to accidentally knock one down, which is going to knock all of the rest down, too. That’s like social fallout—the unintended consequences or friendly fire—of speaking impulsively.

Things get messy fast.

There are, however, a few tips I’ve learned along the way to prevent Watermelon Syndrome:

Planning is power. Pay attention to what people or situations trigger you. Then, when you know similar circumstances are ahead, problem solve ahead of time.
Recall a cringeworthy situation and ask yourself what you thought, what you felt (an adjective), how your body felt (nauseous, sweaty, dizzy), and what you did. The next time you start to recognize those signs, spend five minutes calming down. Take some deep breaths, and consciously choose your next steps based on what you want to happen—not on how you were feeling a few minutes ago.
Notepads (both real and on your phone) are awesome. If you notice that you frequently blurt things out because you’re afraid you’ll forget your ideas, write them out! You can even text yourself, if you need to satisfy the urge to act immediately (I have!). Do not be embarrassed by needing to jot down your thoughts. Why do you think every phone and tablet comes with reminder and to-do features?
Being (H)ungry, (A)ngry, (L)onely, or (T)ired (remember HALT) clouds thinking, often leading to decisions or comments you’ll regret. Try to arm yourself by eating a healthy snack and exercising. Go for a walk while listening to a meditation podcast, an audiobook, or your favorite music. Or toss in “Just Dance 2014.” Ride a bike. Swim some laps. Whatever you like to do, do it. Physical work calms your nervous system; it’s sweaty, but it’s true.

The first time I met my husband was at work. He’d been watching me and was totally embarrassed when I looked over and noticed. To try to save face, he turned and quickly began studying a nearby bulletin board —very seriously. Though I couldn’t see it, I happened to know that this particular board was completely empty. “See anything interesting?” I teased.

Now, that could’ve easily become a Watermelon Syndrome moment for him, but he did something simple and genuine that won my heart. Instead of trying to cover it up or be funny, he smiled shyly, faced me, and extended his right hand. “Hi,” he said. “I’m John.” That was it. And that was all it took. You see, you don’t have to be smooth or slick. In the end, you just have to be you. (Watermelon not required.)

BIO

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The Cat’s Pajamas: Demystifying Idioms for Concrete Thinkers

By Ellen Notbohm

Autism Asperger’s Digest May/June 2014

We toss around animal idioms in our everyday language like bulls in a china shop, without ever pausing to consider that they have the power to terrify our concrete-thinking children with autism.

One fine day I sat in the boardroom listening to a firebrand project manager describe the timeline and strategy for the next customer acquisition campaign. Only days earlier she had told me she was sick to death of enduring meetings with men who couldn’t string together two sentences without spouting sports idioms. “The ball’s in their court,” she mimicked, “and they need to get behind the eight-ball, either go wide or punt! It had better be a grand slam, or we’re on the ropes!”

And while she ran a tight, serious meeting, I had trouble stifling chuckles. True to form, she did not use one sports idiom. But she did say that a certain coworker was in the doghouse. The campaign was supposed to have an element of surprise timing, but this coworker had carelessly let the cat out of the bag to a competitor. Ms. Manager got the information straight from the horse’s mouth and was madder than a wet hen. The coworker had used up one of his nine lives, because just this once she was going to let the sleeping dogs lie. But she would be watching him like a hawk from now on.

She really had a bee in her bonnet.

Did you notice that the previous six sentences contained eight animal idioms or metaphors? Idioms and metaphors are so ubiquitous in our language that we rarely pause to wonder how on earth we ever came up with something as bizarre as “looking a gift horse in the mouth.” We toss around animal idioms in our everyday language like bulls in a china shop, without ever pausing to consider that they have the power to terrify our concrete-thinking children with autism. Ever tell your child that he has ants in his pants, or that you have butterflies in your stomach or a frog in your throat? You didn’t really put a bug in Aunt Kate’s ear, did you? Or open up a can of worms? Nor did you hit a bull’s-eye (or take said bull by the horns), grab a tiger by the tail, beat a dead horse, bark up the wrong tree, or have a cow.

Idioms are never far from my consciousness. Bryce was quite young when it became obvious to me how endemic idioms are in our conversation, and how baffling he found them. Even today, I catch myself babbling idioms and stop to check if the one I just used is one he knows. At 20, he has learned to recognize many idioms, and when he doesn’t know the particular idiom, he can at least identify it as one, given the context of the sentence.

I’m always looking for inroads to teach our kids language skills, and we all know that teaching is easier if we can go into it through a child’s area of interest. In recent years, we’ve seen an uptick in stories about children with autism and their interactions with animals—service dogs, horse therapy, even elephant and dolphin therapies. Not all children with autism are fascinated with or comforted by animals, but if your child is, it can be a natural opening for ongoing teaching of idioms, metaphors and similes. Knowing the origins of the idiom can help the child “picture” the meaning. Here’s how some common idioms were coined:

“Letting the cat out of the bag” (spilling a secret) and “buying a pig in a poke” (purchasing a fraudulent or defective item) are actually two idioms for the price of one. Centuries ago, farmers would sell their piglets in the open-air markets, holding them in large bags called pokes. Crooked sellers would sometimes substitute a cat for the piglet. If the buyer was prudent, he would open the bag before buying, thereby “letting the cat out of the bag.” If the buyer neglected to check, the trickery came to be known as “a pig in a poke.”

“Sick as a dog” did not describe Wilhelmina, a delightful Weimaraner who lived across the street from us when I was a kid. Her favorite thing was vanilla ice cream with green beans on top. To me, a revolting combination, but nevertheless safe to eat. Many dogs are infamous for eating just about anything whether edible or not, and they often pay the price. The “sick as a dog” idiom goes back at least 500 years.

It doesn’t really “rain cats and dogs,” not even here in my verdant hometown of Portland, Oregon. This idiom goes back to the English floods of the 17th and 18th centuries. Torrential downpours left the streets littered with the bodies of cats and dogs that had drowned in the storm. It looked as if they had rained from the skies. Uttering this idiom in the company of a child with autism may get you responses such as, “I don’t see anything except falling-down water!” or “They must all be on the ground by now.”

You might be living “high off the hog” whether or not you realize it. This old African-American idiom refers to those who can afford the better cuts of pork, such as ribs and chops, which are from the upper portion of the hog, as opposed to pig’s feet, chitlins and other less delectable parts of the lower portion.

“You’ve really cooked your own goose!” We use this idiom to mean that someone has somehow brought trouble on oneself. It goes back to a medieval story about a town under siege. To taunt the enemy, the townspeople slung up a goose, symbolizing foolishness. This enraged the attacking army into burning down the whole town, in effect “cooking the goose” and everything else with it.

When I speak at autism conferences, I jot a list of every idiom I hear in the day or so before. I’m always startled at the number. I share these with my audiences and ask them to become aware of their usage of idioms, metaphors, similes, homophones, phrasal verbs, puns. Try this at home: keep a list for a day or two. Consider the imagery those idioms conjure for the child with autism. Rephrase in concrete language so you can begin teaching that, though it may seem strange, sometimes phrases may say one thing but mean something very different. Some kids like to keep a reference log of idioms they hear and learn. Somewhere out there, I’ll bet there’s a youngster whose circumscribed interest is idioms.

And every dog has her day, right? Back in the boardroom, Ms. Project Manager wanted to know what she had said during her presentation that made me smile so. I said she sure did have her ducks in a row, except for the fact that hens standing around in the rain don’t seem to care if they’re wet, so that one was a pure nonsense idiom. When I showed her my notes—she had used an idiom about every fourth sentence—she was speechless. She had to think about it. She hadn’t realized . . .

What’s the matter? I asked.

Cat got your tongue?

BIO

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What Do Federal Laws Say about Bullying?

By Vaughn K. Lauer, PhD
Autism Asperger’s Digest March/April 2014

No Child Left Behind

This brief review of laws regarding bullying will help you protect your child’s educational rights.

No Child Left Behind (NCLB) does not reference bullying or harassment.

Office for Civil Rights

On October 26, 2010, the OCR sent a “Dear Colleague” letter to the states to clarify the agency’s regulatory authority over key issues of harassment. (See at http://tinyurl.com/23gkfyc.)

Section 504 and Title II prohibit discrimination on the basis of disability. School districts may violate these civil rights statutes and the Department’s implementing regulations when peer harassment based on race, color, national origin, sex, or disability is sufficiently serious that it creates a hostile environment and such harassment is encouraged, tolerated, not adequately addressed, or ignored by school employees. [italics added]

Individuals with Disabilities Education Act (IDEA)

The Office of Special Education Programs (OSEP) issued a “Dear Colleague” letter on August 20, 2013. (See at http://tinyurl.com/ov9hr2m.) It states, in part, the following:

States and school districts have a responsibility under the IDEA, 20 U.S.C. § 1400, et seq., to ensure that FAPE [Free and Appropriate Public Education] in the least restrictive environment (LRE) is made available to eligible students with disabilities. In order for a student to receive FAPE, the student’s individualized education program (IEP) must be reasonably calculated to provide meaningful educational benefit.

any bullying of a student with a disability that results in the student not receiving meaningful educational benefit from the special education and related services provided by the school is a denial of FAPE. A student must feel safe in school in order to fulfill his or her full academic potential.

(Note: The terms “feeling safe” and “full academic potential” are not found in IDEA and should not be construed to be codified in the law.)

Remedies under IDEA may be executed through the following avenues.

Inform the school of the issue.
Request an IEP meeting to determine if the learning environment in which the bullying occurred necessitates a change to ensure the child benefits from the IEP.

However, if satisfaction is not obtained, parents may choose to

Lodge a complaint to the district for an administrative review (if that process is a district policy).
Forward a complaint to the state.
Request a due process hearing from the state.

What This Really Means

Parents should not

send a complaint to OCR or an administrative complaint to the district or state, or request a due process until after meeting with school staff to explain your understanding of the bullying offenses and to give staff the opportunity to correct the problem.
approach the offending child’s parent. This is to avoid any interactions under conditions that are not conducive to mediation where you and your child’s rights are not protected.

Parents should describe the offense to the school using words that will help them to visualize the offense noting the following:

the bully’s name(s),
the location(s) where the offense occurred,
witnesses of each occurrence, and
any actions your child took in response to the bullying.

(One condition of bullying is that it has occurred more than once, so make certain you explain each offense.)

Whether you pursue a complaint with OCR, an administrative complaint under IDEA, or request a due process, you need to document the following:

all details of the incident as your child explains it,
what you tell the school,
their response,
any actions taken or not taken by school staff, and
records of correspondences, meeting summaries, or calls with school officials.

Your organized records of interactions will make the respective agency’s job easier in determining the issues and steps to be taken for resolution.

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Navigating Communication in the Workplace

By Lynne Soraya
Autism Asperger’s Digest July/August 2014

In the workplace, the word communication seems ubiquitous. For an adult on the spectrum, that’s something that can often cause anxiety. How do you successfully navigate the world of work when you have a condition which is defined, in part, by differences in communication?

This is a question I came to late in life. Like many of my generation, I grew up without a diagnosis. By the time I found out about autism, I was already well established in my career. Re-evaluating my work life through the lens of autism gave me a lot of insights. The most important was one most wouldn’t expect.

Different Is Good

I came to realize that aspects of autism were key components of my success. Being different from others gave me knowledge that helped me greatly in the workplace. I grew up knowing that not everyone thinks or communicates alike. This, in itself, is a huge advantage.

When I interviewed other adults on the spectrum for my recent book, Living Independently on the Autism Spectrum (Adams Media, 2013), I found that my own experience was not isolated. Peter, an interviewee who works in the financial industry, said:

People tell me that I think out of the box and that I see situations and developments in my field of work a lot faster than others. Also, my way of approaching problems differs from others’. I don’t really see a need to adjust, other than taking more time to explain. But people are not always used to my way of approaching problems—I learned to take time so that others can learn about my typical approaches.

Understanding Your Differences

Peter describes, much like I’ve found, how our approach to problems can be valuable in the workplace. But he also emphasizes that it can be a challenge getting others to understand your style of thinking and communicating. Sometimes, as Peter noted, it just takes time. Or, it means changing your approach.

In my case, I’ve found that educating people about autism helps. Many people you’ll encounter in the workplace don’t have a lot of experience with autism, or the differences that come with it. So when they interact with a person on the spectrum, they filter the person’s words and behavior through their own biases and preconceptions shaped by their experiences as a neurotypical. In other words, they’re not responding to the autistic trait itself, but what they think it means.

When navigating communication differences in the workplace, what you’re really trying to manage is the meaning people take from your words and actions. A key piece of this is understanding the differences that exist. Which traits of yours are most frequently misunderstood? How do your coworkers differ from you when it comes to the way they think about their work? Are they visual thinkers? Do they go by “gut feel”? Are they focused on people, or on facts?

When you understand your own differences, it helps you help others interpret your own body language, words, and actions. Many times, just a brief statement can change how a coworker reacts to a statement or type of behavior. For example, if you have specific coworkers who talk a lot and seem to disengage from you when they talk to you because it takes a while for you to answer, it can make a big difference to say, “My brain is a little slower to process speech—so if I don’t answer right away, it’s not that I’m ignoring you or not paying attention…it’s just that I’m catching up.” It signals them to change the meaning they take from your behavior.

Communication Flows Two Ways

Years ago I was cleaning out the cabinets in a new cubicle I was assigned when I stumbled across a book called The New Office Professional’s Handbook. Although the book targeted people in specific roles, I found some of the advice about relating to others extremely helpful. One useful point I took from it was that relationships in the workplace are not one-way interactions.

Early in my career, it didn’t occur to me that I could have expectations of my manager or my coworkers. I would take direction from managers, and respond to their directives, but I didn’t initiate many conversations. Now, I do. With every new manager, I initiate a two-way conversation in which I introduce myself, talk about what I do, and how I typically go about doing my job. In the conversation, I’ll cover things like

my work style and needed support. (I typically work best when working independently, but if I ever run into a situation where I need support, I’m the type of person who will ask you directly for help.)
any types of differences it would be helpful for you to know. (My “default setting” is to be very direct, so please don’t take it personally. And if it is a problem, please do not hesitate to tell me.)
how you can best communicate with me. (I don’t hear well, so please talk to me face-to-face, so that I can read lips, or write it down. It also helps me a great deal if you give me a bit of time to make notes on things you say.)
how you prefer to work/interact. (What is important to you as a manager? How would you like me to communicate with you? Do you prefer written reports or meetings to discuss status of projects?)

This practice has helped me establish good working relationships. Initiating such conversations allows you to set the tone for the relationship and prevent misunderstandings before they happen. A manager’s job is to keep their employees productive, so by providing insight into what helps you be productive, you’re helping your manager to be more effective as well. What’s important is to keep the conversation focused on the job. It’s not about “here’s how you can help me.” It’s “here’s how you, as a manager, can help me to be more effective and productive in accomplishing my tasks.”

Listening Is Essential

Another technique that’s helpful in communicating across neurological differences is listening. Many people use the words listening and hearing interchangeably, but they aren’t the same. Hearing something can be done by accident, listening cannot. Listening involves consciously paying attention and reacting to what the other person is saying. When frustrated, it’s not uncommon for people to say, “You’re not hearing me!” In most cases when they say that they mean, “You’re not paying attention to or understanding what I’m saying.” Or, “You’re not listening to me.”

Listening is extremely important for those of us on the spectrum because of the differences between how we communicate and how we assimilate information. If we’re not paying close attention to what a coworker says, and making sure we understand completely, misunderstanding can be a frequent, stressful occurrence. A few techniques I use to ensure understanding are the following:

Ask questions. Often people may define concepts and words differently, and shorthand terms for concepts may develop among different groups. Someone might say, “You need to talk to Marketing about that.” Often the speaker may have a specific person in Marketing in mind. They may assume you know who it is, and maybe you think you do, too—but it’s a good idea to confirm. You can do this by asking a follow-up question: “Can you recommend which person in particular I should speak to in Marketing?”

Recap what has been said. When you are talking to a coworker or boss about something important, it can help to recap what has been said, to confirm that what you understood is correct. If there are terms that were used in the conversation that are shorthand terms or are otherwise ambiguous, don’t use them. Instead of using the term, substitute what you think the speaker meant by that term. Frequently, this will bring to light differences between your interpretation of the word and how they meant it. You can say, “So what you’re saying is, before we can complete this project, we need to speak with Jim Miller in Marketing to ensure the project won’t interfere with their project that is underway?”

Tell others how they will know you are listening. Unfortunately for us, some of the ways that neurotypicals communicate they are listening can be difficult for us. For example, eye contact is often interpreted as an indication of listening to a person, so if you have difficulty with eye contact, it may cause people to assume that you aren’t listening to them when you are. In those cases, it can be important to speak up and say something like, “I’m listening, but need a minute or two to process. Looking down helps me focus.” Explaining this changes the meaning of your behavior from “ignoring” to “focusing intently on what’s being said” and prevents misunderstandings.

As Brian R. King, LCSW, mentioned in another interview for my book, often neurotypicals “talk in code,” and we can be tempted to believe that’s “just the way it is.” But like all social activities, communication is reciprocal. We can make choices about how we choose to engage with others, and those choices can make a big difference in how we navigate the workplace. It’s a diverse world; finding common ground when it comes to communication can open up great opportunities to build wonderful working relationships!

BIO

Lynne Soraya is the author of Living Independently on the Autism Spectrum (Adams Media, 2013) and Asperger’s Diary blog on PsychologyToday.com. By day, she works for a Fortune 500 company in the Midwest.

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Vocational Programs for Young Adults with ASD

By Brigid Rankowksi
Autism Asperger’s Digest July/August 2014

Vocational programs for individuals with autism spectrum disorder (ASD) offer similar services but have distinctive styles of delivery. Food for Good Thought and Max’s Positive Vibe Café are two excellent examples.

Food for Good Thought uses a process called “Discovery,” so the program organizer can learn about an individual through activities, interviews, and observations.

Food for Good Thought

Food for Good Thought is based in Columbus, Ohio. This program supports individuals with autism spectrum disorder (ASD) in vocational and employment opportunities in the Columbus area. They offer services to help an individual find employment in the community or in one of the job opportunities offered by Food for Good Thought. There is a gluten-free (GF) bakery connected to the program, and other handmade products like soaps or candles are made by program participants.

There are several services through Food for Good Thought that help an individual find a job that is right for him and then keep that job.

Customized Employment is a service that works with the individual to help him discover a job that best addresses his desires for employment. Each person has his own strengths and interests that need to be taken into account when it comes to career options. Customized employment counselors will help clients either identify a job best suited for the individual with ASD, or they will work to create a job position if the perfect job does not already exist. In this program, there is a process called “Discovery” in which the program organizer learns about the individual through structured activities, interviews, and community observations. The job seekers are able to choose traditional employment, self-employment, or another customized employment option that would make the best fit.

Career Exploration is a program designed to help the young adult who has multiple interests to explore work options in various fields. They are able to meet and talk to employees to better understand what these jobs entail. There are job-shadowing opportunities as well as chances to try a task associated with a desired job.

Job Development is a service that includes aspects of getting and maintaining employment. A client is given support to find a job position in the community that best suits his skills and interests. This service includes identifying and contacting potential employers and working with them to implement reasonable accommodations for the client. Job development includes helping an individual update his resume and assess interviewing skills.

One of the strengths of this program is the individualization of services. Food for Good Thought works with each person to address his individual needs and goals. There are testimonials on the website from previous participants who have found ideal job placements or created their own businesses in order to work in an environment where their special abilities can best be developed. Learn more about Food for Good Thought at http://foodforgoodthought.com.

The hands-on learning style at Max’s Positive Vibe Café helps participants navigate situations similar to those they will encounter on the job.

Max’s Positive Vibe Café

Max’s Positive Vibe Café was founded in Richmond, Virginia, in 2002. This nonprofit organization’s award-winning training program helps prepare individuals with physical or developmental disabilities prepare for a career in the food service industry. This program has been effective in training over 400 students since its development. The café offers a wide variety of healthful, locally grown food to satisfy every palate. It also offers catering services. Everything from boxed lunches to formal, professionally staffed catering events is within their purview.

The idea for the café originated with a father looking to create a suitable employment situation for his son. He then realized there was a need in the community for a truly equal-opportunity employer and training program to help individuals with disabilities prepare for the workforce. Although the café was not successful in receiving grants to build the program, the local community stepped up to donate equipment, time, money, and services to build the restaurant and training facility.

Food service skills are taught in this program to prepare students for real-world employment. Specific technical aspects related to the food industry, such as proper sanitation and food safety, are taught to participants. By learning skills specific to a career field, participants are able to gain experiences to better promote future success in the workplace. The hands-on learning style helps participants navigate situations similar to those they will encounter on the job. Learning in such an environment helps reduce stress by creating a familiar and safe place for them to freely learn new skills.

Job skills like workplace communication and job-seeking skills are taught to help prepare the graduates for a career after training completes. The training program normally lasts four weeks, with a graduation ceremony to celebrate the conclusion of the course. Each graduate is then prepared to look for a job, interview, and work in the food service industry.

At Max’s Positive Vibe Café, over half of the employees are unpaid volunteers who believe in supporting this program. They work in capacities such as helping in the kitchen, doing clerical work, distributing menus and flyers, and spreading awareness of the program. There are 25 paid employees in the café, and more than half of them have either a physical or cognitive disability. Learn more about Max’s Positive Vibe Café at www.positiveviberva.com.

BIO

Brigid Rankowski is a freelance mental health professional, writer, and vaudevillian. She lives in Portland, Maine, with two roommates. She sees her autism as a unique part of her personality and promotes acceptance.

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Independence Days

By Margaret Oliver, MEd
Autism Asperger’s Digest July/August 2014

I remember the point in my teaching career when I realized that I could influence my students’ ability to be independent. It came on the heels of recognizing that I was doing too much for them. That’s the irony of life: you become an educator because you are giving, empathetic, and helpful. These same traits might hold you back from promoting student independence unless you widen your lens.

Teacher Resistance to Teaching Independence

Here are some of the reasons I shied away from teaching independence:

They’re so young!
I feel uncomfortable when I see them struggle.
I can do it faster/better than they can.
They already have so many challenges.
I like to feel needed.

Even with this awareness, I was hesitant to move forward. What really held me back? In measuring the multitude of my teaching duties, I gave independence a low priority. Even though our students have approximately 18 years to achieve independence, I needed to make it a now instead of later priority.

Detecting the Need for Independence

We see the generic demands for independence that are in plain sight—completing seatwork, transitioning to the next class on time, or getting organized and ready to work upon arrival. Some of our students’ next steps toward independence may be subtle, but we can find them. After giving directives and prompts to our students, we sometimes catch ourselves thinking, “This is the tenth time I told you this!” You have just revealed a need for independence. Not all opportunities for growth are exposed, though. Continue being an independence detective because the nonobtrusive, serene student can go unnoticed yet still have the same need for independence, especially with initiation skills.

Once we’ve identified which independence skills to teach, we’re ready to make a plan. A caveat: measure out your growth demands so that the student is not overwhelmed with too many requests for independence or with an independence request paired with several other interventions for growth.

Student Resistance to Independence

When the educator focuses on teaching independence, she might uncover some of these barriers in her students:

fear of change or fear of the unknown
familiarity—the routine for dependence is established
the new skill being requested is too difficult
perceived loss of connection with student’s teacher or assistant

Our students need two things to step into independence: courage and a safety net. You can help them find the courage; and, as in any intervention, you can create a safety net.

A Successful Plan

The fun begins here! Even on our most demanding days as teachers, we can use the following plans with ease to maintain the priority of teaching independence.

Frequent Flyers Club. Perform a brief survey of your daily routines. What actions happen frequently? You may find that the majority of recurrent activities are nonacademic. In my classroom, the most repeated action is when students check their schedules every 15 minutes. I put a lot of effort into teaching independence for this routine—imagine if I had to prompt students through the process 140 times daily! The more independent the students are with routines, the more time you have for teaching and the more time the students have for learning.

Beginning at the end. We are familiar with task analysis where we break a task into steps and teach a portion at a time as a way of building a skill. Sometimes this is referred to as chaining. An effective twist is backward chaining where you teach the last step first. For example, you perform the steps in tying shoelaces but save the final tug for the child. Once the child has mastered the last step, you work backward so the child first learns step 3, then learns steps 2 and 3, and finally chains together steps 1, 2, and 3.

When my students arrive, they are supposed to go to their lockers and put items inside. My students have a much easier time with putting items in the lockers than they do actually going to their lockers. Far into the academic year, they still wander the room before arriving at their lockers. Backward chaining works perfectly in this instance. First they learn to physically put coats and backpacks in lockers. Next they learn to take these items off independently. Finally, we work on teaching them to walk directly to their locker upon arrival. Backward chaining eases up on stressful or complicated demands that occur at the beginning of the task.

The Initiation Factor

I worked with a student to help him learn independent toileting skills. He made fantastic progress, yet still had occasional accidents. Instead of voicing his need to use the bathroom, either vocally or with his communication device, he opted for an accident. The student needed initiation skills to find full independence in toileting.

Your student is showing that he owns the complete process when he initiates a newly learned task. If he struggles to be independent in a task that you believe he can accomplish, analyze his actions to determine why the breakdown occurs. Is it because the skill is not yet learned, or because the student lacks initiation skills? Both you and the student will become frustrated if you continue to teach the task when the skill of initiation is the true deterrent to independence. Initiation is an indicator of self-advocacy, and it is never too early to teach this skill.

My students and I both stand a little taller with pride as they demonstrate independence. No wonder it’s a national holiday well worth celebrating!

BIO

Margaret Oliver is an intervention specialist for students with ASD for Akron Public Schools in Ohio. She acknowledges that she was not skilled at teaching independence as a new teacher. Her students made their needs for independence known, so she learned on the job from the most effective teachers—her students.

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Decisions, Decisions…

By Jennifer Cook O’Toole
Autism Asperger’s Digest July/August 2014

In your life, I hope that you will allow yourself to be sad, but never allow yourself to be unhappy. Well, actually, I’d rather you were neither, of course. I’d love for every day of your life to be filled with adventure and joy and anticipation. But that’s not going to happen. And my telling you so isn’t a buzzkill/gee-thanks-a-lot-Jennifer. It’s a friend being honest because you deserve it and can handle it. Sad is a mood. It’s real—but temporary. Unhappy, though, well, that’s a state of being. And it’s an awful, trapped, stifling place to be.

Real life isn’t a little angel on one shoulder and a little devil on the other, both whispering in your ear and vying for your attention. That’s just not how it works. Instead, as you get older, you’ll find that you must make choices where the good decision feels absolutely terrible…and you’d give anything to avoid certain hurt for an uncertain “possibly improved” future.

Let me give you an example. There’s an old country song called “Unanswered Prayers” that tells the story of a man, now grown. One evening, he accidentally meets a woman who, years before, had been his first love. They are both married to other people now. But upon seeing her, the man remembers how desperately he had once hoped, with every atom of his being, that this woman would be his forever and ever.

I remember being told that life isn’t like a drive-through restaurant where we can order up whatever we want. You can’t just walk up to a guy at a counter somewhere and say:

“Hi, I’d like this particular girlfriend for the next, umm, 40 years, please.”
“OK, and would you like kids with that order, sir?”
“Sure. Why not?”

For the man in the song, the twist is that his prayer hadn’t gone unanswered. It just happened that the answer was someone else—someone, it turned out, he’d love even more. But let’s be honest. When your heart is actually breaking, that’s your reality—not some future possibility that you can’t even fathom. So, I’d reimagine the drive-through a little bit closer to this:

“Hi, I’d like this particular girlfriend for the next, umm, 40 years, please.”
“No. Sorry. Not going to happen that way.”
“Excuse me? I said, ‘Please.’”
“Yup. Still not happening that way. Don’t worry. There’s great stuff ahead, but not with this person.”
“I don’t understand! I don’t want to lose what makes me happy! I don’t want to feel lonely, or rejected, or sad. I really, really don’t want to hurt! I’m happy! I want this!”
“I know, sir. Sad stinks. But unhappy is worse.”
“What! What’s the difference?”
“Sad is a mood, sir. It hurts like heck, but it will pass. Unhappy is much bigger. It’s regret and longing and feeling trapped and scared and alone. And it doesn’t go away. And you know you deserve better.”

At many points ahead, you will be faced with situations that make you want to stomp your feet and bang your fists and yell, “But I don’t wanna!”

It may be, “I don’t wanna break up,” or “I don’t wanna move,” or “I don’t wanna change schools,” or “I don’t wanna follow the rules.” But it won’t matter. I get that. I’ve been there. So. Many. Times. I’ve been there as a kid, teen, young adult, and parent. Choosing to stay behind while my entire school music department went on a cross-country adventure because I had a hugely important advanced placement end-of-year exam the day after the return, and I knew I’d be too exhausted to give it my all. That’d mean a less impressive college application and a year’s worth of serious academic dedication thrown away. Yet not going on the trip would mean I’d be left out of the memory making, and, I feared, left out of everything in times to come. In the end, I didn’t go on the music exchange; instead, I cried the whole weekend. Come Monday, though, I rocked that exam. And while there were a few stories I’d not be able to be a part of, nothing else changed because I’d been absent from one adventure.

There have been so many other examples. Romance that began like a fairy tale and turned out to be anything but…meaning I had to end a relationship with someone I still loved. And even though it would cause deep sadness and shatter dreams I’d held precious, that breakup was the right decision. The trouble was how much I allowed to go wrong before I put a stop to things. Why?

I’d say fear of pain. By design, pain is a good thing. As babies, pain is our teacher. After an “ouchie” or two, we learn what hurts, and the fear of it protects us. Avoiding a burn from a hot stove is a good thing. Avoiding a cut from a sharp knife? Also good. But when the pain we fear is emotional—sorrow, loneliness, shame—there’s a difference. That fear doesn’t protect us; it paralyzes us like a caterpillar too afraid of change to climb into the chrysalis. It doesn’t know that wonder is ahead, just that the familiar will be gone. We’re much the same. Terrified of heartache, we bury our heads and avoid tough decisions. We take what other people dish out. We surrender our dignity, endanger our safety, and cut ourselves off from life’s most magical opportunities.

Part of growing up means learning that being brave means being afraid but doing it anyway. It means learning that sometimes, the scariest, saddest decisions of all are the very best you’ll ever make. It means trusting that you, and all you are and will be, will get to the other side of sad…and that when it seems as though everything is falling apart, it may be that because of your courage everything is actually falling into place.

BIO
Jennifer O’Toole, winner of the 2012 Temple Grandin Award, is an Aspie
(married to an Aspie) with three Asperkids of her own! Her conversationalist presentation of useful insights has touched hearts, lightened spirits, and even led to the founding of Asperkids, LLC, a multimedia social education company. Jennifer is the author of five books, including The Asperkid’s (Secret) Book of Social Rules.

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Autism Mad Libs: How to Fill In the Blanks

By Ellen Notbohm

Autism Asperger’s Digest July/August 2014

On long car trips, my brother and I loved to pass the time playing Mad Libs, a fill-in-the-blanks word game where one player prompts another to insert descriptive words into a story without knowing the context. The results are usually comical. Mad Libs is still around; I recently played it at a baby shower. “New parents should always (verb) the baby (adverb) when he or she (verb) during (noun)!”

Sometimes my work feels a little Mad Lib-y, sans the humor. I’ll get multiple emails or messages, all with the same theme and variables, something like this:

“My (son, daughter, grandchild, niece, nephew) has been diagnosed with (autism, Asperger’s, PDD-NOS, ADD, ADHD). Soon s/he will be starting (preschool, kindergarten, first grade) and I am (anxious, scared, worried, losing sleep). S/he has made great progress with (speech, sensory, behavior, eating) therapies. How do we help (him, her) to (make friends, participate in “regular” kid activities, go places we want to go)? We’re feeling (hopeless, overwhelmed, intimidated) by the complications and challenges of what may happen in the years to come. How do we know if we’re doing the right things? How do we know how much (he, she) is capable of?”

Most parents of children with autism confront some of these feelings and uncertainties. But unless I’m missing something, what jumps out at me first is that I can’t see one thing in these messages that indicates a reason for hopelessness.

“. . . has made great progress with therapies.” What better indicator of hope do we need? A child just starting school is very young—he or she has thousands and thousands of days until adulthood. Progressing in therapy at an early age shows us that s/he has the ability to learn, develop and improve skills. Not only is that terrific, there’s no reason to think s/he won’t continue that trajectory, growing and maturing and advancing in many ways.

“How do we help our child to (make friends, participate in “regular” kid activities)?” How would you do this with any child? By seeking out happenings, settings and people that interest him, not what you think he should be interested in, or what you wish she’d enjoy. An exasperated parent recently told me, “I simply can’t engage him. I’ve taken him to every sporting event I can think of.” I replied, “Stop doing what isn’t working. Ask what he’d like you to do with him. If his answer doesn’t appeal to you, you’ll have some idea of why he doesn’t engage with your chosen activities.” His expression shifted, and I treasure the shaky smile he gave me because I knew things were going be different for this dad and son.

Broadening a child’s interests happens slowly, incrementally. If you don’t start from a place that lets her know you respect her likes and preferences, she may grow to regard all new experiences as something to dread or avoid. She’s more likely to engage with people who share her interests and likes, because that’s true of everyone, not just kids with autism.

“We’re feeling hopeless and overwhelmed by the challenges ahead. How do we know if we’re doing the right things?” There’s a word for this state of mind: parenthood. No parent knows what’s ahead for their child. I recently read a piece arguing that the phrase “do your best” should be avoided, that it causes anxiety because “best” can’t be measured. I couldn’t disagree more. Knowing that you are doing your best as a parent is an intimate relationship with yourself, a feel you develop, an instinct with which you become comfortable. You needn’t explain or measure it for the scrutiny of others. Doing our best isn’t a task-by-task evaluation either, it’s a big picture, long haul state of being. Although far from a perfect parent or wife, I’m at peace knowing that, overall, I did my human best parenting my spectrum children.

Life is random and full of risks, and can change for better or worse in an instant. Those “right things” will change as your child matures; what won’t change is the need for your unflagging commitment to self-education and discovery: gathering information, trusting your instinct, not being afraid to learn by informed trial and error, and nurturing The Three Musketeers (All for one, one for all!) of Autism Parenting: Curiosity, Resilience, and Optimism. When you do this, both parent and child will learn what works, and how to set achievable, incremental goals, embrace the process and enjoy the ride without obsessing about the far-off outcome.

“How do we know how much s/he is capable of?” No parent knows this at age four, or six, or even sixteen. But there is one great certainty: your child is capable of more than he or she is doing today. I don’t go to the extreme of saying anything is possible, because there are some things kids with autism can’t do. They can’t stuff pianos up their noses or fly under their own power. But my own can-do son is an example of how much is possible, can-doing things I made myself dare to dream when he was young. He attends college, drives a car, holds a job, manages a bank account and credit card, cooks, votes, takes himself to the doctor/dentist, and travels alone by planes, trains and automobiles. He doesn’t yet live on his own and I don’t know how long it will take him to finish college. But I have faith in the process, because despite enormous challenges, trusting the process has worked so far.

So I would re-write the Mad Lib like this: “Our child is on the autism spectrum and has made great progress with early intervention therapies. Soon s/he will be entering a new classroom environment. We’re eager to provide a smooth transition; what can we do at home to prepare, and what information and materials should I provide to teachers? How do we teach social thinking skills, nurture a healthy sense of self? What do we need to know and do to continue to guide our child toward reaching his/her full potential? The challenges of the road ahead loom large, but we are encouraged by how far our remarkable child has come already.”

BIO

Further reading

“Being Social Begins with Thinking Social” http://autismdigest.com/being-social/

“Creating Positive Partnerships” http://www.cwla.org/voice/MJ10exchildren.html

“I Choose to be Optimistic,” by Bryce Notbohm http://www.ellennotbohm.com/listmanager/email1012.html

“Journey to Independence: Guiding Your Child with Autism to Adulthood” http://www.ellennotbohm.com/2013/07/journey-to-independence-guiding-your-child-with-autism-to-adulthood/

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