Autism Parenting MagazineIssue 19 • June 2014

THE POWER OF LANGUAGE

FUN TIPS FROM JENNIFER

O’TOOLE

MOTIVATING AUTISTIC KIDS

A GUIDEBOOK FOR RELATIVES

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Disclaimer:Autism Parenting Magazine tries our best to deliver honest, unbiased reviews, resources, and advice but please note that due to the variety of capabilities of people on the spectrum that these are recommendations and are not guar-anteed by Autism Parenting Magazine or its writers.

Dear Readers,

It has been a tough month for the autism com-munity being cast in a negative light. Choosing which language to use is extremely important! In the past month, someone commented on how we should stop using the term Asperger’s because it

doesn’t exist anymore. To that I would like to explain: 1. I ask people how they would like to be referred to when I can ask them specifically; 2. the articles we post on social media (Facebook, Twitter, Google Plus, etc.) are often informational articles found on the in-ternet that we think you can benefit from in some way or find hope from despite the occasional misuse of language (by journalists not knowledgeable about ASD) to keep you informed, if there is an issue with the article please contact the journalist that wrote the article perhaps you can educate them and if you think the article was posted in error please contact us; 3. that just because the DSM-5 changed the diag-nostic criteria does not mean that people that were diagnosed with Asperger’s (with the DSM-IV) don’t relate to that term and prefer to use it, 4. people do not lose their diagnosis and as such have every right to refer to themselves as “having Asperger’s or as an Aspie.” Also, Maayan Jaffe reported that scientist Idan Menashe at the Ben Gurion University in Israel stat-ed, “…he believes there are multiple strands or varia-tions of the disorder. We are trying to use the genetic data to ask whether each different mutation [relates to] a different type of autism.” Due to this, I feel that sometimes it is necessary to state which “type” of autism is being referenced. Ultimately, I try to avoid labeling people and when it must be mentioned I ask the person but when writing about a population and not a single person this can get quite complex. The bottom line is - words empower people, inspire people, educate people, but can even degragate and sterotype people.

Unfortunately, once again, media has portrayed au-tistic people in a negative way. Thanks so much [not really I’m joking] to the Washington Post for printing

an article entitled Significant Statistical Link Between Mass Murder and Autism, Brain Injury even though the entire “literature” of the study that the article was based on is said to be “anecdotal and speculative” by the authors themselves. Even worse, the Post’s ar-ticle fails to mention that the study states, “Various follow-up studies suggest that people with ASDs are no more likely to commit violent crime than the gen-eral population, and may even be less likely…”

Forbes contributor, blogger, and scientist, Emily Will-ingham, wrote a rebuttal to the Washington Post article and in it states,“…Clare Allely and co-authors claim that 67 of the 239 “eligible killers” they evalu-ated in their review had “definite, highly probable, or possible” autism spectrum disorder.” Really?!! Yet this is a credible source and warranted an article by the Post? That’s as clear as Wanda Sykes in the movie Evan Almighty when she says, “I go to church every Sunday. Well, every other Sunday. Hell, I’ve been to church.” I mean “possible autism!” Willingham goes on to state, “…at one point [the study] elides it com-pletely by referencing “evidence of ASD traits.” Ev-eryone shares autism traits–autistic people aren’t Martians with an entirely separate set of nonhuman behaviors. That doesn’t make everyone autistic, in-cluding people who might have overlapping traits and commit terrible acts.” I couldn’t agree with Will-ingham more; I could list several people in my per-sonal life that have some characteristics of autism.

https://www.youtube.com/watch?v=cfx1vCG52YM

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To dig deeper and explore the numbers that the study covers, Emily Willingham explains, “But a closer look at their numbers shows that of these, only six were in the “definite” category [ETA: details on those six summarized here]. That’s 2.5% of the total of 239 they examined. It’s a percentage that happens to be just slightly less than the 2.6% identified in the most thorough study of autism prevalence in the general population to date…” Willingham is explaining that there is not a “significant increase” because there is only a “.1” difference based on the study she sites in South Korea and if you consider the CDC’s rate (1 in 68 in the US) it is even less and therefore the Wash-ington Post would be wrong in printing a “significant increase. “

To prove how erroneous the article was, Paula C. Durbin-Westby further checked their facts and states, “It turns out that only 6 had “definite” ASD and of those 6, several have no reliable sources to back up the diagnosis and at least one contains testimony by an expert witness that the killer did not have an autism diagnosis.” So let’s get this straight, five of the 239 killers were autistic; five! Many people wrote how the word “Significant” should be removed from the Washington Post’s article should be changed and I signed the petition to have it altered but I fear that fear has already been put in place. I’ve heard psy-chologists and parents ask how to explain to their child that they aren’t destined to be a mass murder and more parents fear that this negativity will only lead to more bullying and hate crimes toward autis-tics. Words matter! If they didn’t we wouldn’t have books, magazines, Twitter, etc.

Before the article was posted I had been researching if I should use person-first or identity-first language. At first, I turned to Twitter where I publicly asked the question to all autistic adults, that when it must be mentioned, what would you prefer person-first lan-guage (person with autism) or identity-first language (autistic or Aspie)? I was shocked to see that the peo-ple that preferred person-first responded publicly to my tweet whereas the majority of the identity-first supporters chose to privately message me about their choice and why they supported it. I then asked a disabled friend’s opinion (that is how he prefers to be labeled) and he recommends these books: Claim-ing Disability: Knowledge and Identity - By Simi Lin-

ton; Disability Discourse - By Mairian Corker & Sally French; Exploring Disability - By Colin Barnes & Geof Mercer.

I continued researching all sides of the issue and ulti-mately came across an article that I imagined would be similar to what I would write if I wrote about lan-guage because it discusses both sides of the issue. However, it is even more awesome because it is writ-ten from a first-person perspective. I strongly recom-mend you read our opening article by Lydia Brown explaining person-first and identity-first language. It is because of all this research that the magazine will predominantly use Identity led language from now on but that we will leave individual language choic-es up to our writers.

Speaking of writers and positivity, I had the pleasure of interviewing Jennifer O’Toole who is an Aspie that started a company filled with great educational ideas, and design tips and so much more to empower and encourage our children to be the best they can be. She just released this book entitled, The Asperkid’s Gameplan and it is filled with tons of fun, at-home games that build skills without the kids even realiz-ing they are being taught. Even better we will be do-ing a book give-away on Facebook during the month of June so one lucky reader will get the chance to do these awesomely fun skill-building games with their children over the summer. Be sure to check out our product review of the Yogibo and the new fam-ily friendly recipe that The Autism Food Club will be generously providing monthly. Also, our team has been working overtime to convert the magazine is-sues to Kindle and we would like to announce that Autism Parenting Mag-azine is now available on Kindle so please tell your friends and family members!

Kind Regards,Leslie Burby

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Table of contentsSometimes it is a Nice Person that Says a Bad WordOne mom helps a teenager realize how much words matterAuthor: Dawn Potter

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Interview with Asperkid’s Jennifer O’TooleAutistic author and role model offering unparalleled adviceAuthor: Leslie Burby

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25 AUTISM IN THE NEWS: LEAST RESTRICTIVE ENVIRONMENT DURING THE SUMMER How LRE will soon start to be implemented year roundAuthor: Megan Kelly

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29 REVIEW OF YOGIBOUsing beanbags for sensory soothingAuthor: Leslie Burby

32 Q&A SECTION- WHAT SHOULD I KNOW AS A RELATIVE OF AN AUTISTIC CHILD?Some basic information to share with relatives who just don’t knowAuthor: Leslie Burby

36 CELEBRATING THE WHOLE CHILDHeartwarming story about the strengths of her childAuthor: Lauren Brukner, OT

38 RECIPE-SPINACH AND CHICKPEA CURRY A healthy dinner recipe with Indian flavorsAuthor: Elouise Robinson of The Autism Food Club

39 PLANNING FOR HIGH SCHOOLAuthor: Bill Wong, OT

MotivationHow motivation also needs to come with respecting boundariesAuthor: Jaclyn Hunt, Life Coach

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LANGUAGE

Person-first Language Doesn’t Put Me First

I have been familiar with this rift among the autism community over the use of “person with autism” as opposed to “Autistic person,” I hadn’t fully explored the diversity of perspectives on the topic until now.

By: Lydia Brown

During a meeting in the summer of 2011, anoth-er Massachusetts Autism Commission Adult Services Subcommittee member, who I believe is the parent of an Autistic child, and an Autis-tic self-advocate expressed disagreement over

the terms. Feedback from one of our members sug-gested changing “ASD individual” in our report to “in-dividual with ASD.” The Autistic self-advocate sitting beside me, who also has an Autistic brother, voiced her objection to use of the term. “I disagree,” she said as the suggestion was read aloud. “I’m not a person with autism; I am Autistic.”

Immediately, a mother sitting next to her responded, “I come from a time where that word, ‘autistic,’ had

-- still has -- a negative meaning. It’s offensive. When someone refers to my son as ‘the autistic,’ I cringe at that word; I get ready to defend him.”

After our meeting, I took the time to explore a wealth of opinions online about the use of person-first lan-guage; from those who support it and those who oppose it. The theory behind person-first language is that it puts the person before the disability or the condition, and emphasizes the value and worth of the individual by recognizing them as a person in-stead of a condition. And that’s a great idea. In fact, when discussing specific people, I have never once heard anyone -- self-advocate, parent, teacher, or otherwise -- refer to a person as anything except by

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It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of their skin.

their name. I can’t think of any teacher -- at least any decent one -- who would refer to a student as “that Autistic kid,” or “that kid with autism.” And I certainly can’t think of any parent who wouldn’t refer to their child by name.

But why are we self-advocates so opposed to this terminology? Aren’t we all about de-emphasizing and correcting inaccurate, misleading, and harmful stereotypes and attitudes? Right? From that other perspective, you would think we would support the use of person-first language, because we want to be seen as people with equal rights, value, and worth to non-Autistic people. But we don’t. Because when people say “person with autism,” it does have an at-titudinal nuance. It suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of their skin.

One argument I encountered in one of the more cogently-written papers in favor of person-first lan-guage expostulates that because cancer patients are referred to as “people with cancer” or “people who have cancer,” as opposed to “cancerous peo-ple,” the same principle should be used with autism. There are some fundamental flaws with this anal-ogy, however.

Cancer is a disease that ultimately kills if not treated or put into long-term remission. There is absolutely nothing positive, edifying, or meaningful about can-cer. Cancer is not a part of a person’s identity or the way in which an individual experiences and under-stands the world around them. It is not all-pervasive.

Autism, however, is not a fatal disease. It is a neuro-logical, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a per-son’s identity, and it defines the ways in which an individual experiences and understands the world around them. It is all-pervasive.

Furthermore, I identify as Asian, in regards to race, and Chinese, if you go by ethnicity. I am American if you go by nationality. I am Christian in regards to re-ligion, and Liberal, if you go by politics. I am a wom-an. I am Autistic.

None of these cultural descriptors are inherently good -- nor are any of them inherently bad. It is not an inher-ently good thing to be Asian or American or Christian, and it is not an inherently bad thing to be Chinese or Lib-eral or a woman. There may be aspects or consequenc-es of my identity as an Asian or American or Christian that are advantageous, useful, beneficial, or pleasant; likewise, there may be aspects or consequences of my identity as a Chinese or Christian or a woman that are disadvantageous, useless, detrimental, or unpleasant. The converse statements are also true.

If this is true of these cultural labels, why is it correct to say that I am Asian, or that I am Chinese, or that I am American, or that I am Christian, or that I am Liberal, or that I am a woman, and for some reason incorrect to say that I am Autistic? Would I say that I have Asianness, or Chinese-ness, or that I have Amer-icanness, or that I have Christianness, or that I have Liberalness, or that I have womanhood? Those state-ments are ridiculous. They are considered incorrect because these identifying adjectives are precisely that -- markers of my identity. Not one of them is the sole component of my identity, but they overlap and interact and form the foundation for who I am and how I exist in the world.

This is true of autism. “Autistic” is another marker of identity. It is not inherently good, nor is it inherently bad. There may be aspects or consequences of my identity as an Autistic that are advantageous, useful, beneficial, or pleasant, and there may be aspects or consequences of my identity as an Autistic that are disadvantageous, useless, detrimental, or unpleas-ant. But I am Autistic. I am also Asian, Chinese, Ameri-can, Christian, Liberal, and a woman.

These are not qualities or conditions that I have. They are part of who I am. Being Autistic does not subtract

LANGUAGE

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Being Autistic is not giving up on myself or limiting myself or surrendering to some debilitating monster or putting myself

down. Being Autistic is like being anything else.

from my value, worth, and dignity as a person. Be-ing Autistic does not diminish the other aspects of my identity. Being Autistic is not giv-ing up on myself or limiting myself or surrendering to some debilitating monster or putting myself down. Be-ing Autistic is like being anything else.

Some Autistic people choose to engage more active-ly with Autistic culture and community, and others would prefer not to involve themselves in the larger community. So? Some Christians choose to engage more actively with Christian culture and community, and others would prefer to avoid Christian-focused events or communities. Some Asians choose to en-gage more actively with Asian culture and commu-nity, and others do not.

It simply shows the importance assigned by an indi-vidual to the various aspects of that individual’s iden-tity. But these factors remain equal as inherent parts of that individual’s identity regardless of the individ-ual’s choice to tap more deeply into one or another of those aspects and not others.

Person-first language is a form of hypocrisy. Its stron-gest advocates are non-disabled parents and profes-sionals, very well-meaning people who love their friends and family members and students deeply and who want to do right by them by treating them as human beings. But if a fairly large number of us to whom this type of language refers find it objection-able, why are we told “Well I respect your opinion, but I think person-first language is more respectful.”

It’s nonsensical. While I do know that there are people on the au-tism spectrum or from other parts of the disability community who prefer person-first language, the vast majority of people whom I know are in agreement with my objections to its use and conse-quences, especial-ly in terms of shap-ing and reflecting

societal attitudes.

Why is it culturally appropriate and typical to accept race, religion, and nationality as markers of identity that ought to be designated with proper adjectives that (in English) precede the noun “individual” or “person” and not those that fall under the category that we call “ability?” Is it a reflection of a secret fear of the non-disabled of people who are not like them, or is it a reflection of the inhibiting fear of offending one of us? As most of us prefer to identify with prop-er-adjective language (disabled or Autistic), using this language is highly unlikely to offend. Asking me, “So you have autism?” will almost always produce a wince and a cringe. An identity is not something that I have. It is who I am.

What I found most interesting in reading other essays on this topic is that many of the same arguments are used for both positions, but with separate sides, nat-urally, coming to very divergent and contradictory conclusions.

Firstly, I saw in at least two articles in favor of using “person with autism” that the authors strongly op-pose language referring to disabilities like “suffers

LANGUAGE

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from,” (i.e. “Alan suffers from Asperger’s syndrome;” “Joey, an autism sufferer;” etc.) which has tradition-ally been a talking point of self-advocates as well. I do understand that not everyone who supports the use of terminology “person with autism” would dis-agree with language like “suffers from,” but it is still interesting that there are those who do. It suggests a fundamental shared value; that people with differ-ent neurological conditions are not “suffering” be-cause of their difference or disability.

Secondly, as alluded earlier, those on both sides want to emphasize the value and worth of the person. Per-son-first language advocates believe the best way to do this is by literally putting the noun identifying “person” before any other identifiers. (As noted in one of the other articles opposing person-first language, however, English is a language that puts adjectives before nouns, whereas there are multiple languages that always place adjectives after nouns. In Span-ish, for example, “person with autism” is “persona con autismo,” while “Autistic person” becomes “persona autística.” In both cases, autism/Autistic follows the noun.) Person-first language opponents believe the best way to do this is by recognizing and edifying the person’s identity as an Autistic person as opposed to shunting an essential part of the person›s identity to the side in favor of political correctness.

It is impossible to affirm the value and worth of an Autistic person without recognizing their identi-ty as an Autistic person. Referring to me as “a person with autism,” or “an individual with ASD” demeans who I am because it denies who I am.

Lastly, what is most interesting indeed is the shared expressed sentiments that using or not using per-son-first language is necessary to change and shift societal attitudes toward Autistic people. Returning to the premise of this article, this is the sole reason why this debate continues to be argued and why many people on both sides regularly emerge upset and feel personally attacked. Language does play a large role in shaping societal attitudes.

But let’s think about what we are doing when we use these terms. When we say “person with autism,” we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has val-ue and worth, and that autism is entirely separate from what gives them value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word “with” or “has.” Ultimately, what we are saying when we say “person with au-tism” is that the person would be better off if not Autistic, and that it would have been better if they had been born typical. We suppress the individual’s identity as an Autistic person because we are say-ing that autism is something inherently bad like a disease.

Yet, when we say “Autistic person,” we recognize, af-firm, and validate an individual’s identity as an Au-tistic person. We recognize the value and worth of that individual as an Autistic person -- that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual’s poten-tial to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people--and that is not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.

That’s why, when I read a few articles scoffing en-tirely at the debate, and dismissing it as ultimately irrelevant (insisting that each person should use the terminology they prefer and to ignore what other people say or write), I was concerned. The question of person-first language is definitely important and cannot be disregarded. The way we use language af-fects those around us -- in our immediate communi-ties and in society at large. Trends of language have the power to transform ideas and attitudes. To dis-miss this as “a silly semantics argument” denies the power of language.

LANGUAGE

Referring to me as “a person with autism,” or “an individual with ASD” demeans who I am because it denies who I am.

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http://www.autistichoya.com/2011/08/significance-of-semantics-person-first.html

Interested in other perspectives? Here are some links to feed your curiosity.

People who use “autistic” or “autistic person”:- Why I dislike “person first” language by Jim Sinclair,

founder of Autism Network International (ANI) *full text

- Dear “Autism Parents” by Julia Bascom- ‘ Autistic’ or ‘person with autism’? by Jean Winegard-

ner- Autistic vs Person With Autism by Karin- Autism-first Language by Elesia Ashkenazy, Nation-

al Advisory Council of the Autism NOW Center- Autism as a lifestyle as seen through the eyes of an

autistic adult by Kassiane Sibley- I don’t have autism. I am autistic. by Kassiane Sibley

(new!)- On Language by Gordon Darroch- Climb off your high horse already by Rob Gorski- Autism First (Again) by Jeff Gitchel (new!)- People-First Language by Twitchy Woman (new!)- Reply to a Disgruntled Reader by Leigh Merryday

(new!)

People who use “person with autism” or “per-son who has autism”:- People First Language: What it is and why it mat-

ters by the Arc of Anchorage- Person First Language- Put me first: The importance of person-first lan-

guage by Mary Tobin, M.Ed.- Person First Language by Katie Nelson- An Autism Parent on Kathie Snow’s People First

Language by Julie L.- People First Language by Kathie Snow (PDF)- Olmsted on Autism: “Retards” and “Autistics” by Dan

Olmsted- The Power of Language by Michele Guzmán of the

University of Texas Hogg Foundation for Mental Health (new!) This was written in direct response to the Autistic Hoya article.

People who use both interchangeably:- “Has Autism” versus “Is Autistic”; A muddled de-

bate from Autism and Oughtisms- The Last Word on “Person First” Language by Stuart

Duncan- Is It “Autistic Person” or “Person with Autism”? by

Stuart Duncan- Autistic or Person With Autism? by Susan Senator

(new!)

Bio: Lydia Brown is an autistic activist and writer (www.autistichoya.com) with diverse experience in legislative advocacy for disability rights, dis-ability policy research, direct action for radical disability justice, grassroots organizing against ableist practices, and critical disability theory. Lydia is most interested in intersectional work addressing state-sanctioned violence against multiply-marginalized disabled people.”

LANGUAGE

What does, however, disturb me is the vitriol dur-ing debates about this (and similar) topics in the autism community. While it is, as repeatedly em-phasized, an important debate with huge ramifica-tions both short-term and long-term, hurling ad hominem insults, making baseless accusations, and shouting over tables (or computer screens) at the people on the other side ultimately demeans both you and them. It shows great immaturity, inability to civilly and peaceably discuss important topics, and insensitivity to the personal experiences vested in each of us with a stake in this debate. Having strong opinions on a topic and being able to have a respect-ful discussion with someone else are not mutually exclusive.

So what can we do moving forward? Or, more im-portantly, what should we do? To those of you who use “person with autism,” I will always respect your right to express yourself however you like, but I urge you to reconsider the consequences of using such language. To those of you who use “Autistic person,” I urge you to consistently use such phrasing every-where possible, whenever discussing autism and is-sues that affect Autistic people, and to develop co-herent, rational explanations for why you prefer this terminology, so that you can engage in such mutu-ally respectful and civil exchanges with others.

That, actually, goes for everyone. If we ever want to accomplish anything as a community, as a move-ment, or as advocates, we cannot allow ourselves to be constantly divided by infighting and vicious bul-lying -- and yes, that occurs from all sides of these debates, not just one. It is imperative that we learn to engage critically and respectfully with one an-other, and to value each individual’s voice and feel-ings as equally important. Otherwise, we’ll become even more dysfunctional than my subcommittee has been in recent months.

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Sometimes it is a Nice Person

Who Says a Bad Word…Written By: Dawn Potter

It started as an innocent story told by a nice young man, and I was quietly smiling at the pleasant moment between him and my husband…and then there it was, one of the very few words I do NOT allow to be said in my house or near my kids “retarded.”

PARENTAL NARRATIVE

He was speaking about how he felt someone was looking at him at that point in the story. I’m sure he didn’t actually mean that they thought he was mentally challenged. He meant that they looked at him strangely, as if he was sil-

ly, unrefined, uncouth, or even loutish. I then heard a little voice say “what retarded?” My youngest son had heard him.

I called him away to talk to him, I knew he had not thought of what he was saying, especially in the con-text of where he was saying it. We spoke, I explained how there are very few things I’m not okay with be-ing said in my house, but that word is certainly one of them. I watched his face change from confusion to surprise to remorseful as he listened to me explain why I am not accepting of that word being said in the way that it was.

I didn’t yell or rant, I wasn’t angry with him, not when I heard it, not when he looked surprised at first that I was saying it wasn’t allowed, not as I explained why. There was no anger in my heart because he truly is a sweet boy that adores my sons. He wouldn’t pur-posely hurt them, wouldn’t purposely, callously use a word society uses to mean “less than” wouldn’t de-grade them by stating they were less than him. He was simply a teenager using a common slang word.

I don’t think he’ll choose that word again, I know that if it should pop into his thoughts after today his mind will conjure up a picture of my boys and what that word has the power to make society believe about those with special needs. And I know he’ll choose a different word. Because words truly do have power, power to shape how we perceive life, how we decide

who our equal is, as well as who is not, and how we will treat both. I know he’ll choose other words that don’t demean the boys he adores, because he’s a good person with a good heart, who is now more aware of why a common word should not be com-monplace in our vocabularies.

Biography:Dawn Potter is blessed with three incredible chil-dren of her own, and two great step-daughters. Both her sons have been diagnosed as Autistic, and she celebrates the journey of motherhood all five children are taking her on. When not home-schooling, going on grand adventures of make-believe with her children, hosting workshops or providing private life coaching on Autism and positive parenting in the Greater Toronto Area of Ontario, Canada she blogs at: http://behindstar-bursteyes.wordpress.com/

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INTERVIEW

Interview with Asperkid’s

Jennifer O’TooleLeslie: Hi I’m Leslie Burby, editor in chief of autism parenting magazine and today I’m here with Jennifer O’Toole. Jennifer is a public speaker and author. She has been diagnosed with Asperger’s. Her husband and all three of her children been diagnosed with Asperger’s, as well.

Jennifer: We’re overachievers. [she laughs]

Leslie: She has won several awards. Her works and books are all related to Asperger’s. She started the company Asperkids, LLC which is filled with Asperkid books and other cool stuff about autism. I thank you Jennifer for joining me today.

Jennifer: You’re welcome, glad to be here.

Leslie: So can you tell our readers that aren’t familiar with your story when you realized you have Asperg-er’s?

Jennifer: Sure. Everything Asperkids really has taken off in the last couple of years. I think that’s because when you are speaking from that first person per-spective, and from that inside place and with the message,

“Hey it’s going to be okay guys! It’s a little ‘geek-tas-tic’ sometimes, a little challenging others, but it’s go-ing to be okay;” that resonates. This all began about three and a half or four years ago. It was my daughter that was diagnosed first. She has just turned eleven and she was just seven when she was diagnosed. Then our middle child and then my husband and me and then our youngest was diagnosed. We always said with our youngest had he been neurotypical we wouldn’t have known what to do with him. [jokes] Like so many families with a kid on the spectrum, our eldest at that point had just such splintered skills. She was absolutely hyperlexic, just wanted to be in

the books all the time -- which I can completely iden-tify with. I get that. But what do you do in a class-room when the child’s reading at a high school level but socially and organizationally isn’t “making it hap-pen” [which is called Executive Functioning]? So in the span of two years she was in five different class-rooms; never changed because of bad behavior but just because schools didn’t know what to do with a child like mine. My background happens to be in ed-ucation, so we decided to home school for one year. During that year I think what happened was I was

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INTERVIEW

waiting to hear, “You’re doing this wrong” or “you’re doing that wrong” from all the various therapists that are in our lives. Instead people were saying, “Why are you doing that? That’s really cool! Why are you doing this?” I thought, “I don’t even know what I’m doing!” I didn’t realize my approach was drastically different from the norm, because my assumption was that what I think and do, they thought and did, too. It’s a common spectrum trait called “mind-blindness.” I re-ally didn’t know that what I knew, they didn’t know. Does that make sense?

Leslie: Yes. Absolutely.

Jennifer: In the summer 2011, three of them [thera-pists] in a span of one week said, “You have got to either start a school,” (which I laughed at because at that point my kids were 7, 4 and a year old) or they said, “write a book.” I thought, “All right fine!” Writing is easy for me so I’ll just sit down and do it. In a typi-cal Aspie fashion with hyper-focus, I sat down and in three weeks wrote the book and submitted it. That was the manuscript of what became Asperkids: An Insider’s Guide to Loving, Understanding and Teach-ing Children with Asperger Syndrome. I submitted it to Jessica Kingsley Publishers in London and within

two days had an email from the CEO asking if I had a manuscript. I said, “Well, yes I do!” Within three weeks I had my first book contract and that came out in May 2012. The same day it came out, the book received the Temple Grandin Award for best international contribution to the global community by someone on the spectrum. Which, talk about knock me over with a feather! I mean, what was that about?! The fifth book in the series just came out [The Asperkid’s Gameplan] and I am presently working on book number six. It has been a profound and awesomely cool experience.

Leslie: Now what kind of audience where you hop-ing to reach? I was going to say with your first book but with all of them, did you hope to reach a parent? Kids? Educators? What was your goal?

Jennifer: It depends upon the books. So of course when I first set out to write the 1st book, Asperkids: An Insider’s Guide to Loving, Understanding and Teaching Children with Asperger Syndrome, I didn’t expect that there would be at least five more to come afterwards, right? So really the answer is in the subtitle An Insider’s Guide to Loving, Understand-ing and Teaching so I guess that talks about all

https://www.youtube.com/watch?v=0iAnhvB37PI

16

INTERVIEW

THE BOOK I’M WORKING ON RIGHT NOW IS FOR GIRLS ON THE SPECTRUM AND I DID A KEYNOTE TO THE NATIONAL AUTISM SOCIETY OF THE UK FOR WOMEN IN OCTOBER ON THIS TOPIC.

three-- which is parents and family members and educators; especially if you’ve got a child who is not “more obviously challenged.” Things sometimes seem like a behavioral issue, and it can really be hard to identify especially if you have a girl. A classic story was that my daughter, not long after she was diagnosed, her teacher who was a 30-year career teacher had us all in a conference and she said, “I just, I don’t believe this diagnosis is accurate.” As we all know, this is not a rubber stamp diagnosis. And I was trying to be respectful. She said, “I don’t see anything in her that recollects any of the students I taught before with Asperger’s.” I said, “Well, no of-fence meant in any way, but I’m just curious- how many of those children were girls?” She said, “Well, um… none.” I said, “Okay, then with all due respect, I think you might be wrong.”

Leslie: Yes I had a similar experience with my daugh-ter’s school.

Jennifer: And that’s the shared journey! The follow-up line was great because the teacher said, “I just think she’s a lot more like you, Mr. O’Toole,” and two months later he was diagnosed. In retrospect, the bottom line is, if it’s something that people don’t un-derstand, they often turn the spotlight back on you and make you question yourself.

The book I’m working on right now is for girls on the spectrum and I did a keynote to the National Au-tism Society of the UK for Women in October on this topic. I’m proud to say they have shared the audi-ence’s responses were unlike ever before and I think that again comes from just understanding what As-perger’s and what “autism can look like” from the fe-male lens. There’s an article I wrote called “Spotting the Pink on the Spectrum” for Australia’s Autism As-perger’s Network Magazine. They are a proprietary magazine, solely subscription based, but very kind-ly allowed me to share the article via the Asperkids website for free. The end of the article gives a really good checklist- the first one of its kind, I believe, what we’re looking for when we’re talking about girls. So I recommend to anyone to go to the Asperkids web-site, just type in “pink” in the search window and it’ll come up.

But to answer your question about my audiences, for the first book I was trying to reach the families and that includes the doubters found therein, as well as, those who were just desperate to un-

derstand. To give them the message, “Hey this isn’t what you expected, but that doesn’t mean it’s bad.” I want educators to know as an educator, “Hey it’s not the child’s fault!” As teachers we have to step up our game, get creative and don’t get complacent and here’s how to do it. Kids are not at all unreachable. Then for the second book in the series, it is to help everybody who is not on the spectrum understand the kids, and is The Asperkid’s Secret Book of Social Rules.

17

INTERVIEW

Leslie: I love the cover design for it.

Jennifer: My daughter designed it!

Leslie: Oh I didn’t know that! I love how it looks like a notebook; that is so creative.

Jennifer: She will be so proud and I’m supposed to mention it every time it comes up. So I did my due diligence. The truth is, when I see all the books being bestsellers and even more so, that I am so blessed ev-ery week to get phenomenal letters from adults who are reading The Secret Book of Social Rules. It says, “For tweens and teens,” but I will tell you that near 25 to 30 percent of the book’s readership are adults. This makes perfect sense because I wrote it for myself. It was post diagnosis and I started noticing all these small social rules. Oh! Oh! Oh! And honestly? I had a therapist say to me, “You could make a book out of that.” I said, “Why? You think other people need it?” It’s now the all-time best seller of our series and in the market and in our particular niche! But can I tell you, consistently the response people share with me is, “This is the first time I’ve heard anything positive about my child.” That breaks my heart.

Leslie: That breaks my heart, too. That’s why I started writing, too. I was sick and tired of seeing everything negative. I don’t see negativity in my children so I want other people to have a different view.

Jennifer: Exactly!

For the subsequent books we’ve added Not Your Aver-age Coloring Book, which is actually primarily drawn by kids on the spectrum around the world. We made a coloring book that had literary heroes and Fibo-

nacci sequence, geometry and science and nature and history. The Asperkid’s Launchpad, (which is the third book) was on the top 100 list on Amazon for home design, among other lists. And it cracks me up because I have no inte-

rior design skills whatsoever…It’s just about laying out your home to empower the kids while teaching them to have fun in the process. Yes, each book has different audiences but they all overlap and kind of work hand-in-hand which is so exciting. It seems to be happening with the newest book The Asperkid’s Game Plan, too. So I’m really happy about that.

Leslie: Now is The Asperkid’s Launchpad: Home De-sign that Empowers Everyday Superheroes sensory fo-cused? Or do you discuss a variety of topics relating to the home?

Jennifer: It’s a variety of topics: the people and the place and the process of balancing responsibil-ity and choice and about the physical layout of the space. It is the little things, regardless of age or gen-der, you can do around the house that save the san-ity of morning or down time. At the same time, the book also teaches these brilliant children that it’s about setting things up in a way that teaches the ba-sic skill of self-reliance, and also the process of learn-ing how to do something-- even if it’s sweeping up

THE ASPERKID’S LAUNCHPAD, (WHICH IS THE THIRD BOOK) WAS ON THE TOP 100 LIST ON AMAZON FOR HOME DESIGN, AMONG OTHER LISTS.

18

INTERVIEW

the crumbs under the table. From beginning to end: figuring out the materials you need, being able to access them, going through steps of the process and being able to assess when it’s done. All of these skills will apply to homework; will apply to job-training; college; your marriage, whatever. Learning in those concrete ways, you instantly feel part of the team, it is not about adding to mom or dad’s to-do list it’s actually about subtracting from it. In addition, it’s about getting the kids the right tools they need, so that they can show themselves and really, truly come to believe in their own abilities. That’s of paramount importance. It’s wonderful if your child can memo-rize the entire periodic table but if he can’t find his homework, it’s all moot.

Leslie: Right. I have to say, I really love that some of my writers are adults with Asperger’s. They have taught me so much. I said to one of them, “You know one of my kids is having a really hard time and I’m not really sure why it’s always when we go upstairs to this one room.” She said, “Well, is it cluttered?” I said, “Well, yeah. Well for me it’s not cluttered. I’m a bit of a pack-rat.” She said, “You can’t do that! Think of the visual stimulation, you completely forgot about that.” I am constantly thinking about what kind of sensory sensitivities relating to sound could there be in this situation? I hadn’t thought about the clutter or about the color of the walls. On a different note, I agree with you about the whole team work thing. I want my kids to be independent but I’m also an extremely busy Mom so I can’t be picking up after them constantly.

Jennifer: Nor should you.

Leslie: Right. I tell my kids that they are a part of the family and we are a team and must work together. So all my kids do everything from matching socks to helping mommy unload the dishwasher I mean, as soon as they could walk, they were helping.

Jennifer: You don’t want them to develop that “learned helplessness” where they truly believe “I

can’t do it,”right? It doesn’t feel good. In fact that’s what we’ve extended into with the next book that just came out in April which is Asperkid’s Game Plan. It’s about purposeful play using ordinary stuff around the house. I’m talking like marbles and rubber bands and bananas and being able to teach really concrete things in unexpected ways. And we cover social skills, executive functioning, academic enrichment…with-out ever telling a child that they aren’t doing it “right.”

Leslie: My father always told me you will never get anybody’s attention by telling them what they did wrong.

Jennifer: Right, but if you do this whack-a-doodle kitchen science experiment about den-sity and watch how things are layered as a basic foundation, then you can turn-it-up by adding whatever educa-tional details you want like what mol-ecules are and what density is. I pro-

vide a guide with those details or you can focus on how everything has “matter” and some things have more “matter” about them. You can then extrapo-late, or generalize, this idea to organizing personal priorities. Such as, if the child’s priority is to just get back to finishing yesterday’s Minecraft game, but they have homework to do, or you have to go to the store to buy shoes and those things are boring. Yes some priorities are boring but some “matter” more. So the book has a lot fun activities like tattooing bananas with a social skill lesson behind it. You see, that’s just the way to get in to teach those basic so-cial skills constructs. Truthfully, a lot of adults could use help with this. We say, “Team work, team work, team work,” but have you ever broken down what it means to be on a team or what your team expects of you? If you’re playing a game and you don’t know the rules, you’re going to fail and you’re going to feel like a failure. That’s why I keep trying to give fun ways to teach these abstract “Rules of Life” to kids.

Leslie: Yes I can’t stand boring teaching concepts, and I think it’s great that you applied it to learning social skills.

Jennifer: One of the questions I was getting asked a lot by parents was about how to teach using flash-cards. I think flashcards are lame so I made this

WE SAY, “TEAM WORK, TEAM WORK, TEAM WORK,” BUT HAVE YOU EVER BROKEN DOWN WHAT IT MEANS TO BE ON A TEAM OR WHAT YOUR TEAM EXPECTS OF YOU?

19

INTERVIEW

download (with that same name) that instead uses a light saber and plastic cups to teach everything from math facts to elements of the periodic tables.

Leslie: That’s great! So you also started Asperkids, LLC, then. Can you tell us about that?

Jennifer: Asperkids became a multimedia social ed-ucation company, because I didn’t want to be con-strained to just books. Soon we are starting a non-profit called the Awesomeness Foundation and an Academy to teach lesson in fun ways. Some things will be live forums so kids can meet other kids “just like them” from around the world. We do that in a way already: when you go to the Asperkid’s Shop For All Kids, and buy the Asperkid’s Congratulation kit, which is one of our main products. It is filled with all sorts of cool stuff and if you send us your picture wearing the Asperkids t-shirt, we post it on Facebook and you get congratulations from all over the world. It’s really awesome!

Leslie: Oh, wow, I might need to buy that for my daughter’s birthday.

Jennifer: I’m also working on some other things spe-cifically for women.

Leslie: If you could pick one thing to tell our readers, what would be the one most important message?

Jennifer: The nemesis of all things and all people awesome is anxiety and the “misbehavior” it causes is really missed behavior because your kids are asking for help. They want to know why they are different and telling them why is a blessing not a curse. Once one understands themselves, anything is possible! That label is like pull or push on a door it just tells you what to do and how it works, and then you are in the door and anything can happen.

Leslie: Thank you so much for joining me today. To see more of Jennifer’s books and products please visit the Asperkid’s website.

Jennifer: Thank you and to everybody out there, just remember: “Relentless Positivity.” In every moment, we have to choose how to react and move forward. Choose relentless positivity!!

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SOCIAL SKILLS

MotivationBy, Jaclyn Hunt MA, CAS

A question that I get asked on a daily basis from potential clients goes a little something like this: “How do I make [Person’s Name] who has Autism/Asperger’s/PDD/ASD to do [a], [b], and [c].”

21

SOCIAL SKILLS

The simple answer is: “You can’t.” Unless a per-son is motivated and willing to change, there is nothing in the universe that will make them change. That being said, there are ways to en-courage the desire and motivation to change

as well as create an environment that is safe and conducive to the desired changes. My job is to show families how to create that environment in the home and at school, as well as, spark the desire for change in each and every family member. When conditions are right, the person on the autism spectrum has a clear choice whether or not they want to participate in the progress of the rest of the family, or fall behind and miss out on the fun. In my experience, when there is an obvious choice between two options with a clear and desirable outcome, most people on the spectrum take the next step and choose one of those possibilities.

So let’s take our example question and apply it to a real life circumstance. A mother calls me and is desperate to get her teenaged son diagnosed with Asperger’s to sit down at the dinner table and eat dinner with the entire family. Every single day she prepares all of the foods he enjoys and caters to his every demand and wish, but still he does not sit at the table and eat with the family. She has tried beg-ging him, yelling at him, crying and breaking down

in front of him out of frustration, and tried her best to not even care at all. Still, she has this strong desire to have her son sit at the dinner table with the fam-ily because that’s what “successful” families do. “How do I make Jason, diagnosed with Asperger’s, sit at the dinner table and eat dinner with the entire family?” The short answer is still: “You can’t.” However, there are things you can begin to change today that will increase the likelihood that Jason will sit at the table with the family for dinner sometime in the future.

Initially, the first thing that needs to be done is to eliminate all expectations. Many parents have a dif-ficult time doing this. No matter how many times the desired behavior did not occur, the parents still expect it to happen. This unrealistic expectation is going to lead to disappointment and frustration not just for the parent but also for the entire family. Soon the tension in the air is so thick that even if Ja-son succeeds at sitting at the dinner table for a few moments and decides to leave out of discomfort or uncertainty, an explosion on the part of the parent will follow. This will cause Jason to never attempt to sit at the dinner table again because his fear of do-ing it wrong or failing will overpower his desire to be with the family and to make the family happy. If all expectations are eliminated, the parent begins to shift the focus away from Jason and onto the dinner

22

SOCIAL SKILLS

Jaclyn Hunt is a Certified Autism Specialist (CAS) and Life Coach who specializes in the Autism and Special Needs Population. She works with adults on the spectrum, parents of autistic children and adults, spouses of adults on the spectrum, and anyone affected by autism or other related spe-cial needs. Visit her website to learn more:

www.asnlifecoach.com

asnlifecoach@gmail.com

Twitter: @asnlifecoach

Facebook: https://www.facebook.com/Autis-mAndSpecialNeedsLifeCoach

experience. A husband and wife can have dinner together, the other siblings can participate, and the parental focus should be on the here and now with the people who are present. Even if you are the sole participant of the dinner, you must learn to appreci-ate and enjoy the experience.

Now, once all the expectations of Jason are elimi-nated and all participants actively enjoy dinner, the mood of the dinner will have changed dramatical-ly. Dinner is no longer a time of stress, anxiety, and frustration. Instead, dinner becomes a pleasurable experience where there is an air of safety, fun, and excitement. Soon Jason may wander in to see what he is missing out on. He may even sit at the dinner table for a few moments. If he is criticized in any way at this point he will retreat and never come back. If he is praised and told that it is nice to have him join the family, he is more likely to stay. Chances are he will leave immediately, but if he leaves on a posi-tive note of appreciation, rather than a negative re-sponse to his presence, he is more likely to return the next night. So the second change on the part of the parent is to keep the criticisms to a minimum and in-crease the praise and positives as much as possible. Jason needs a safe environment to engage in a so-cially difficult situation such as a family dinner. If he is scared off or feels like a failure from the beginning, he will decide to avoid that particular situation in the future. On the other hand, if he sees the potential that it could be a positive and desirable experience, he will be back the next day to explore the possibility further.

Additionally, the third change that the family or par-ent must make is to have a never-ending supply of patience while waiting for Jason to make his decision. Those on the autism spectrum frequently examine every possible scenario, even those unrelated to the situation, at length before they are able to come to a decision. Jason may not process everything that happened at the first dinner until he experiences the consistency of it a few times over. He may then stay for a longer period of time and be stuck in that pat-tern for quite a while. If the parent loses patience at

this point they will undo all of the hard work every-one has currently put into getting Jason to sit with them at dinner. It may seem like tiny little steps to the family, but for Jason they are tremendous strides that will eventually translate into every decision he makes in his entire life. As he learns to make deci-

sions he will get quicker, more efficient, and more confident in his choices. Be-lieve it or not, it all starts right here at the dinner table.

Finally, the family must be able to ac-cept the fact that dining together may

not be something Jason can handle. Acceptance is key because if the family can accept Jason’s discom-fort he will be more likely to continue trying for the future rather than shutting that door forever. Further-more, Jason will generalize these decision-making skills to other aspects of his life. Perhaps he will come to a compromise such as sitting on the couch facing away from the family rather than holed up alone in his room. When the parent and entire family accept the limitations of the person on the autism spectrum, they allow that person to truly explore the world and figure out his or her place in the world. When there is tension, frustration, and anxiety there is isolation, fear, and lack of progress in the autistic individual and the family unit as a whole. The goal to promote change in any person is accomplished by changing everything else around that person and allowing them to have a safe place to assess the situation, figure out what they want from that situation, and to be trusted enough to make the right choice. All choices are personal, and we all have the right to choose what works for us. That is the very long answer to how you get someone with an ASD to change.

ADDITIONALLY, THE THIRD CHANGE THAT THE FAMILY OR PARENT MUST MAKE IS TO HAVE A NEVER-ENDING SUPPLY OF PATIENCE...

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emailto:psupport@option.org

SPECIAL EDUCATION

Least Restrictive Environment DURING THE SUMMER

The summer season is finally here, and it’s almost time for the long summer break from school. Summer brings warm weather, picnics, barbeques, swimming, and time for lots of outdoor activities.

Despite all the fun, and pleasant things about summer, there is also the fact that the summer break from school can cause major disruptions for some children with autism. Many autistic children thrive on a routine that remains as

unchangeable, and stable as possible. A few months off from school changes their daily routine drastically. Parents often voice concerns about whether or not their child is eligible for summer school, what the summer school’s curriculum is, and whether or not

By Megan Kelly

their child will be able to socialize with their peers during the summer break. They also worry about their child regressing during their long absence from school, and how detrimental this regression will be to the child’s education, and development.

Although the long breaks from school cause most children to experience setbacks in their education to some degree, neurotypical children can usually get back on track relatively soon after returning

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SPECIAL EDUCATION

back to school in September. However, for many children with autism, this is not the case. Often these children can take anywhere from twenty to sixty days to get back on track to where they were in their education before summer break. Because of this, school districts offer ESY (extended school year) programs, and services that run through part of, or all of the summer. The purpose of these programs is to provide a stable environment for children where they can continue their education through the summer, helping to eliminate setbacks, continuing to promote positive development, and allowing children to socialize, and interact with their peers. The programs should also be designed to follow LRE (least restrictive environment), such as providing an ESY program that integrates both disabled, and non-disabled children in the same environment, particularly if that is the setting that the child with a disability is a part of during the regular school year.

In April of this year the parents of a five year old boy took the school district of the town they lived in to court (T.M. Vs Cornwall Central School District). The boy had qualified for ESY services, and the school he attended wanted to place him in a self-contained special education classroom for the summer. The boy’s parents wanted him in a mainstream classroom with other students. The school said that they could not provide this, as they did not offer a mainstream, general education summer program. They also stated that LRE requirements did not apply to summer school programs. The boy’s parents found this unacceptable, and so they enrolled him in an integrated program at a private school. They then took Cornwall Central School District to court, seeking reimbursement for the cost of the private school tuition, which they said they had been forced to send their son to, due to Cornwall’s ESY program failing to meet the requirements to be as least restrictive as possible.

The court ruled in the parents favor, and concluded that LRE requirements apply to ESY programs, and services, just as they do during the regular school year. The court stated that,

“Under the IDEA, a disabled student’s least restrictive environment refers to the least restrictive educational setting consistent with that student’s needs, not the least restrictive setting that the school district chooses to make available.”

(source: http://www.nyssba.org)

This court decision changes the way that school districts build their curriculum’s, and design their ESY programs. Schools will now have to consider how they can provide the least restrictive environment possible in their ESY programs, just as they must consider it for the regular school year. ESY services that include LRE, and if necessary integrated settings, must be provided to any child with an IEP (individualized education program) that qualifies for ESY, and is part of an integrated setting during the regular school year.

In order for a child to be eligible for ESY programs, they must meet the requirements set by the state they live in. One of the main requirements is that the child has shown proof that they regress over the summer break with no ESY intervention. Although most of the state’s requirements differ, there are some that are relatively common. These include:

“1- Is this a student for whom the state mastery test checklist is completed?

2- Is this a student for whom progress is extremely slow and incremental?

3- Is this a student who requires 1:1 assistance for 3 or more hours of the school day?

4- Is this a student who has significant behavior/socialization/communication issues?

5- Is this a student whose academic curriculum is extremely different from same age peers?

6- Is this a student who has a documented history of severe regression/recoupment issues?”

(source: Julie Swanson, http://www.yourspecialeducationrights.com)

To find out the requirements and policies for ESY in your state, you can contact your states Department of Special Education.

Sources:

http://www.yourspecialeducationrights.com

http://www.nyssba.org

http://idea.ed.gov

http://lozanosmith.wordpress.com

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If so, you are not alone. Travel can be scary and overwhelming for parents and children alike. Many children with ASD strug-gle with transitions, changes in their daily rou-tine, visiting novel places, meeting new people,

and interacting in social situations. As educators of children with ASD we have found that planning and preparation are essential to prepare a child with ASD.

Autism & Travel is a step-by-step guide that helps you plan and prepare for travel. We provide you with the tools, skills, and supports necessary to make travel not only possible, but a rewarding and enriching ex-perience. We have drawn and adapted from Chapter 3

BOOK SECTION

AUTISM & TRAVEL: Strategies for Kids to Enjoy an Awesome Experience!

of our first book, Starbrite Traveler: A Travel Resource for Parents of Children with Special Needs, the strat-egies and interactive activities needed to meet the unique needs of children with ASD. By following our

clear and concise steps, you will learn how to apply strategies that have proven

to be effec-tive with c h i l d r e n with spe-cial needs.

First we identify trav-el concerns parents have shared with us. Next we address those concerns by applying strat-egies that have an evidence-base to change behavior and/or teach children new skills. To re-inforce skills, we

follow up with activities to practice with your child before and during vacation. Additionally, we address the important aspect of safety, and include interac-tive illustrated scenarios and activities to teach and reinforce safety with your child.

In the final chapter, we look at autism friendly at-tractions, hotels, and ski resorts throughout the United States that offer unique programs with spe-cial provisions to meet the needs of children with ASD.

Have you avoided travel with your child with Autism Spectrum Disorder (ASD) because you were concerned that the demands of travel would be too much for him or you?

28

Using beanbags for sensory soothing

PRODUCT REVIEW

I can’t stop talking and now writing about the Yogi-bo.

We received the Yogibo Max (which practically the size of a twin bed) and the Yogi Support pillow (which is a giant U-shaped pillow much like a Boppy for adults). The Yogibo Max or Midi is a must have for autistic children.

So what is it? The Yogibo is like a beanbag but it feels more comfortable because of the filling that is used. It reminds me more of memory foam then the typi-cal bumpy bean bag feel. What is really great is that you can buy refill beads for the inside if they start to not be as foamy.

So what do you use it for? We have used our Yogibo Max for many different things.

1. A seat2. A couch3. A bed4. A crashpad5. A squeeze/compression tool6. A punching bag

I had a bunch of families with children of all ages and with different neurology come over and test out the Yogibo. Every single child loved it! The adults loved the comfort the Yogi Support provided. They could lounge on the Yogibo Max with the Yogi Support wrapped around their back for the added support that most adults need without getting a neck cramp or backache. My husband is often found using the Yogi Support on my daughter’s bed during nightly story time.

https://www.youtube.com/watch?v=YZU7tVtsjMI

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We laid the Yogibo parallel to my daughter’s twinsize bed and I held the kids on the waist as I ‘flew’ them onto the Yogibo. They loved being able to crash and jump off the bed (with an adult present).

We also stood the Yogibo upright and sat one child on top then shimmy the sides so they sunk down into it a little. My son affectionately calls it “sitting in his nest”. I assume because he is up high and all curled up. He loves the gentle encompassed feel. He often seeks deep pressure as part of meeting his sen-sory needs so the Yogibo has helped fulfill that need without him tearing apart my couch cushions.

The other mother’s and I noticed that the children sat still for longer periods of time and were able to focus longer while seated in the Yogibo. An Occupational Therapist I spoke with suggested that it was because the children felt secure as opposed to a regular chair where most of their body wasn’t supported since many autistic children have difficulties with knowing where their body is in space.

The moms were all commenting on how fantastic it would be if schools had Yogibo Midis or Minis, which are smaller versions of the Yogibo Max. The only com-plaint that the mothers’ had was that they couldn’t afford the large Yogibo Max at $229. However, if you compare the cost of crashpad (approximately $120 US dollars) and add the cost of a video rocker gam-ing seat ($30-$150) the Yogibo seems to give you plenty for your money. I especially liked the feature of the zip slip cover. So I can unzip and wash the cov-er whenever needed. To checkout more of Yogibo’s products visit their website at www.Yogibo.com.

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Reach Out

We encourage you to send in your questions, comments, suggestions and concerns to AutismParenting@gmail.com. We will do our best to find you answers, resources, and improve the magazine to help all families with children on the autism spectrum. Please note that we may post your ques-tions and edit them if needed. Please include a phone number in case we need clarification. We thank you for reaching out to us. We will do our best to provide helpful resources and the most current information.

Q&A

Dear J,

Thanks for caring enough to ask this question. I think that you have some very good points. People in the autism community want people to be knowledgeable and accepting of autism but perhaps we haven’t sat you all down and ex-plained it all. This is in part because all autistics are people that are as unique as you and me. So the first thing you need to know is to not group all autistic people in a box. They are unique in-dividuals just like any other person in the world but with a different neurology. With that in mind I will try to explain some things but please re-member that not all of these may apply to your relative.

Dear Leslie,

I am an extended family member of parents of an autistic child. We both live in the same metro area, but sadly we don’t relate. I have made numerous offers to have them visit my home, have had them with us on a couple weekend getaways, as well as traveling to their child’s milestone events so he would have kids (my kids) to help celebrate. I have offered to help them get him in the ocean, mountains, sleepovers, etc. I have also made, what in retrospect are typical blunders, on our first encounter when observing violent behavior toward my own children and their other child. We were never prepared, and were just going on our experience with friend’s kids who were also on the spectrum.

I thought we had gotten past the fallout from that first outing where we blundered, had subsequent successful outings but they did not include the spouse of my relative. I believe the current rejecting of all things ‘me’ is related to that single parent, but it none the less blocks any connection for the rest of us, most sadly for the autistic child.

Having said all that, do you have any advice for us self-learning relatives in circumstances like this? The parents are often shouting ‘awareness’ but we don’t know what autism entails.

QQ

A1. Always assume they are competent; even if

they don’t speak. Treat them with the same re-spect and competency of any other person. They may not respond but they can hear you and they usually understand.

2. Learn about sensory issues and sensory processing. This is paramount in understanding many things. All people with autism have trou-ble processing the information that is taken in through the senses. When all this information gets processed incorrectly or is overloaded with information the central nervous system causes havoc. Think of a computer that gets sent too many tasks to do because the user keeps click-ing and clicking and overloads the computer to

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Q & A

the point that the computer no longer knows what to do so it stops working or shuts down. This “shut down” in people with autism is referred to as a melt-down. The Central Nervous System is important for many reasons and when not running smoothly can interfere with eating, speaking, and cause self-inju-rious behaviors (ie. head-banging, biting). I explain in my latest book Early Signs of Autism that people can be under stimulated or over stimulated in each sense (not just see, hear, taste, touch smell, but also vestibular and proprioceptive senses). If they are over stimulated like the sound is really loud or the lights are too bright or they are visually overstimu-lated then the person will need to be removed from the environment so they can calm down. In many cases, people with autism calm down by “stimming” or repeating a movement like flapping their hands or shaking their leg, flicking a pencil, etc. If they are un-der stimulated they will seek out the sensation that their body is craving to fulfill that need. For instance, my son bangs his head if he doesn’t get enough ves-tibular input and my daughter will chew on anything if her jaw doesn’t get enough vestibular stimulation. These behaviors can seem like a misbehaving child if one is not aware of the cause behind them.

Due to the fact that their CNS is wreaking havoc it puts them on high alert almost all the time which is why they seek comfort in things that they can con-trol like maintaining the same routine.

3. Learn to not be offended. Many people I know are offended if little Johnny doesn’t eat grandma’s dinner - don’t be! This goes back to sensory issues. Most children with autism do NOT eat much because of the sensory assault that goes on when they do. Do not say things like “He will eat when he is hungry” or “What a picky kid.” Besides sensory issues, many times children with autism can have difficulty chewing. My

daughter has mild hypotonia (low muscle tone and trouble gaining muscle) and her jaw gets very tired from chewing which makes her not want to chew anything. For the first five years of her life she only ate smooth things like stage one baby food, pud-ding, applesauce, and yogurt. Plus the temperature of all her food and drinks had to be room tempera-ture. Also, do not be offended if little Johnny doesn’t want to attend a birthday party or go the beach - it may be too much for him to handle. Respect the fact that some things may not be enjoyable for him the way they are for you.

4. Do not pity him. The biggest challenge people with autism have is Neuro-Typicals (us) that don’t re-late and don’t try to understand. You are a wonder-ful person for trying to understand and learn. I hope that if you reach out (and tell them or maybe send them a card if they aren’t confrontational) that you are trying to learn more about autism to better un-derstand and respect their child that they give you a second chance.

5. Do not be sad that he is “missing out” and force him to join or participate. Ask him and explain what you are going to do in detail (they like to know what they are getting into to help them prepare) but don’t force them. If he wants to join he will. Many activi-ties that we find so important - they don’t. Invite but don’t force.

6. Anxiety runs high. Often children with autism have anxiety. This can be in part because of the sen-sory issues and also because many have differences in memory function. They might recall the time they went to the beach and a crab bit them so now they never want to go the beach again. What happened once can happen again. Don’t belittle a situation or a feeling that someone might have. Validate that what happened was scary and encourage them to try again perhaps mentioning the many positives that can take its place.

7. Figurative language is as clear as speaking in Chinese. Autistic children tend to take every word that you say literally so be careful how you speak. Although, many people can be taught the meaning of metaphors, it takes time to learn all those ‘hidden meanings.’

8. Some people with autism have delayed pro-cessing so if you tell them to do something or stop

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Q & A

doing something you might need to wait a min-ute or two for your request to be understood. This is hard for many Neurotypical people to grasp and I often see people repeating themselves while the child is about to follow through. This also happens with speech. It takes my son a very long time to ver-bally respond. Not because he doesn’t understand but because speaking is very difficult for him. Try to tell them ahead of time. For instance, say, “In three minutes we are going to do X,Y,and Z,” to allow them extra time to process and prepare. Instead of saying, “We are doing ___ now,” and expect an immediate compliant response.

9. Punishment doesn’t usually work. For many au-tistic children, rewards or highly motivating things work much better and keep things positive. A sticker chart or a seashell for each good behavior and when they have ten they get an ice cream cone or a small candy, I usually recommend something edible so the reward is gone quickly so they continue the good be-havior towards their next reward. If you give them a toy car they can stop being motivated because now they have what they want and it isn’t going away like the consumable item.

10. Sleep is often an issue. Many have trouble falling asleep and staying asleep. Most autistics produce less of the sleep hormone melatonin that aids in sleep. Behaviors can be exacerbated by lack of sleep for some people. However I have spoken with some autistics that believe that don’t need as much sleep to function. Either way, a typical 8-10 hours of sleep every night is often not the case, which can leave the parents tired.

11. Social cues and social skills are often difficult to understand. So speaking sternly or frowning to show

disapproval is often not effective if they haven’t learned those social behaviors and if they aren’t looking at your face.

12. Eye-contact is not important. Many autistic adults have told me that they can’t look at someone’s face or eyes and process what is being said or talk to them. They have to visually process your face and to have to process your words as well is too much. I rec-ommend saying things like, “Please come here and stand by my side,” or “Can you stand in front of me at arm’s length when talking to me?” You can always ask them if they heard you, if you are worried that they aren’t listening but don’t ever tell them to look you in the eye. My daughter and my son both look at the floor or to the side of a person and will occa-sional look at the persons face to see if they are still talking or still listening. While I respect that much of society believes that someone isn’t listening unless a person is looking in their eyes, I think their needs to be a balance of respecting some people’s difficulty in being able to make long-term eye contact for the duration of a conversation.

13. They don’t always say the ‘right thing’ or what they intended to say so go easy on them. They usu-ally don’t mean to offend and don’t always realize when they do. For some children on the spectrum they can come across as “know-it-alls” because they are so smart but often lack subtleties when present-ing their facts.

14. They have trouble calming down once they are angry because of their inability to self-regulate so give them some space and time. Many will need a quiet place to help calm down. Some will repeat a physical movement to help their body calm down such as flapping their hands, or rocking. This re-petitive movement is known as stimming and they should be allowed to do whatever helps calm them (as long as they aren’t injuring themselves or others.)

I hope that these explanations help you to better un-derstand some common behaviors. However, please note that these are broad generalizing statements and some may apply to your relative where as oth-ers won’t. I hope your relatives realize that scream-ing awareness without providing you with informa-tion of what to be aware about or the opportunity to prove your awareness isn’t going to help anyone.

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Do you have a story to share? Perhaps you have in-formation that would be helpful to other parents with ASD kids and want to share the info. Why not share your story/info with us? Autism Parenting Magazine wants parents and caregivers to unite

to help each other. Our writing guidelines are simple.

Ideally, the topic needs to be relevant to the magazine. Any topic that is related to parenting a child with au-tism or being a person on the spectrum that is parent-ing would be a relevant topic. Released on a monthly basis, the magazine features the latest news, tips and advice for parents of children with autism. With helpful advice that covers subjects like: behavioral tips, sensory processing issues, mitigating meltdowns, special edu-cation needs and getting access to services, we are con-fident that the magazine will become a must read for parents of autistic children.

We do ask that you submit a topic, title or idea of the ar-ticle to make sure that someone hasn’t already covered the same thing by emailing the editor. You may use a blog post that you have posted on your blog already.

THE ARTICLE SHOULD BE A MINIMUM OF 300 WORDS. FONT DOES NOT MATTER. WE DO ASK THAT IF YOU USE SOURCES TO PLEASE SITE YOUR SOURCES AT THE END OF YOUR ARTICLE TO AVOID PLAGIARISM.

At the end of your article please include a few sentences about yourself and your writing or autism related back-ground with links to your site or products.

Please note that we cannot post your article with-out a small bio. So please do not forget to send a few sentences about yourself with your article.

If you have something interesting or informative to share please emailLeslie@autismparentingmagazine.com.

CONTRIBUTE

Autism Parenting Magazine

Celebrating the Whole Child (Quirks and All!)

It must have been a few months ago when my, now 5 year old, son asked me: “Mom-my, can I have a magical wizard party?” I was expecting Spiderman or Superman, like most of the parties that he has gone to, so I was quite surprised at his choice of themes. Nevertheless, I quickly agreed and started looking into magicians.

PARENTAL NARRATIVE

While friends and family came to our house today in play clothes (wouldn’t most chil-dren, for a birthday party?), my son insisted on wearing suit pants, a button-down shirt, a vest with a pocket-handkerchief, and a

black bow tie. “I have to be fancy, Mommy,” he told me yesterday as he carefully chose his outfit. “Any-ways, I want to look like a magician!” And he achieved both of his wishes, looking adorable and very “magi-cal” throughout his party.

As we opened the many gifts he received, I was re-ally touched by two things: 1-how well our friends

and family know my child, and 2- how unique (and quite quirky) he is as an individual. Among the piles of colorfully-wrapped presents included: a magician set (from us), an electric circuit building set, a magi-cal science set, a create-your-own-marker set, etc. A friend of mine actually said to me (I am still laughing about this, by the way, because it is so him): “I just googled ‘child professor’ and chose a present from that list!”

The highlight of my night must have been when my little professor ran over to me, just a few minutes ago, and said: “Thank you so much for the party. You are

by Lauren Brukner

36

PARENTAL NARRATIVE

the best mommy ever, and the prettiest. But don’t tell Shayna (his sister) I don’t want to hurt her feel-ings.”

Does life feel hard as a parent? Definitely. Is it hard to manage my son’s low vision, keep his self-esteem intact, while I try my upmost to ensure that my girls feel nurtured and loved? Oh, my goodness, yes. It has been, and I know it will continue to be a chal-lenge to detach myself from “therapizing” my chil-dren, and feel at peace knowing that we as a family are all just trying our best, but setting up the ground-work for building adaptive and functional habits in the future.

There have been times that I sit down, at the end of a long day, where life just feels like a tricky juggling act in a circus that I’m not sure I’ve signed up for (or read the fine print); it is in these moments where I look at the pictures of my children on the wall, feel the warmth of small hands hugging me close before bed, or simply think of my son thanking me, arms open wide, love clear in his eyes. These moments, these small, delicious moments with my children make all of the challenges more than worth it.

Every child is so unique, so special, with their own abilities, strengths, and areas of difficulties. This no-tion was apparent to me at my son’s birthday party, the importance of really taking in the moments of recognizing your child (whether you are a parent, guardian, educator, or therapist) for their beauti-ful uniqueness, especially in those challenging mo-

ments that make you wonder how you got here in the first place.

Some of the cool gifts that Yosef got today for your own ‘Little Professor’, here are a few examples:1. Michaels: Magic Science For Wizards Only (by Sci-

entific Explorer)2. Melissa and Doug Magic Set3. Snap Circuits Jr. Kit4. Crayola Marker Makerxoxo, Lauren

Bio

Lauren holds her Masters of Science degree in Occupational Therapy from New York Univer-sity, She is a mom to three young children, two of which have sensory processing disorder (with one child who is visually impaired).

She currently works in a school-based practice, treating children with a vast array of needs, from physical impairments, to autism, ADHD, emo-tional regulation difficulties, and sensory pro-cessing dysfunction. She often holds workshops and trainings for an array of school-based staff. Lauren is also a Certified Irlen Screener for Irlen Syndrome and Scoptic Sensitivity, and a trained Practitioner in Integrated Listening Systems.

Lauren is dedicated to teaching children how to self-regulate independently, or to the best of their ability. She stresses self-control and the consist-ent use of coping and self-regulatory skills and exercises to both her own kids, and the children that she treats clinically. This was the motivation behind writing her first book: "The Kids' Guide to Staying Awesome and in Control: Simple Stuff to Help Children Regulate Their Emotions and Senses" (Jessica Kingsley Publishers, 1st Ed.). She hopes that you love reading it as much as she loved writing it! :)

You can pre-order Lauren’s book, "The Kids' Guide to Staying Awesome and in Control: Simple Stuff to Help Children Regulate Their Emotions and Senses", wherever books are sold. You can check out her website for developmental strategies and tips, along with book ordering information, on www.stayingawesomeandincontrol.com

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HEALTHY EATING

TIPS: Adding a few cherry tomatoes for an extra rich flavor. For a meatier curry try adding some chicken or prawns.

Method y Chop, grate or process the chili, ginger and garlic rough paste. Peel and

y chop the onion. Drain the chickpeas. Rinse the spinach. Make up stock. Heat

y up the oil in a frying pan. Add the chili, garlic, ginger and onion. Cook

y for 5 minutes. Add the ground cumin, ground coriander, turmeric and tomato

y purée and cook for 2 minutes to release the flavor of the spices. Stir in

y the chickpeas so they’re coated in the paste like mixture. Add the chopped

y tomatoes and gradually add the stock, bring to the boil and simmer for 10 -

y 15 minutes until a curry like consisten-cy is reached. Add the spinach and

y then stir through the garam masala. Finish with some freshly chopped

y coriander and serve with rice.

Ingredients• 1 teaspoon olive oil• 1 medium onion• 2 cloves garlic• 1 red chili• 2cm fresh ginger (peeled)• 2 teaspoon ground cumin• 1 teaspoon ground coriander• 1 teaspoon turmeric• ½ tube tomato puree• 1 x 400g tin (14-15oz can) chickpeas

• 1 x 400g tin (14-15oz can) chopped tomatoes

• 300 millilitres (1 1/3 cups) vegetable stock

• 350 grams (approx. 4 packed cups) spinach

• 1 teaspoon garam masala• Fresh coriander to finish

To find out more or sign up for free membership to the Autism Food Club visit www.theautismfoodclub.com

Spinach and Chickpea Curry

Healthy Eats courtesy of

Serves 4

38

TEENS

After all, from my experience, I believe planning for high school and college were interrelated to a degree. This article will talk a little about my experiences back in my eighth grade and what I took away from what my parents did.

Back in my middle school days, I did not know I had Asperger’s yet. However, I dealt with a different chal-lenge in the form of being an English learner, as my family and I immigrated to the United States just before I started sixth grade from Hong Kong. By the time eighth grade came, I was on track to be main-

by Bill Wong, OTD, OTR/L

PLANNING FOR HIGH SCHOOL AND COLLEGE

If your autistic child has the ability to handle mainstream education in middle school, it’s not that farfetched to start thinking about his/her

future in high school and college.

streamed when I entered high school. The only thing holding me back was my English skills, though they were better than the two years before that. Because of that, I was on a slower paced curriculum on all aca-demic subjects except math, where I was placed in my school district’s “Gifted and Talented Education Program.”

Towards the end of eighth grade, I learned that I was going to be mainstreamed in ninth grade, which was par for the course for someone who came to the Unit-ed States in sixth grade. Because of that, my parents

39

TEENS

sat me down one day during that summer, “Bill, we need to talk about your high school plans. This is im-portant because we want you to get into a good col-lege.” So, they sat me down and outlined the courses I most likely would take during my four years in high school and when I should take my SAT’s. Back then, I did not know the importance. Looking back with my clinical lens as an occupational therapist now, how-ever, I realize how important that talk was. I got into a decent college for undergrad.

What did my parents do right?

1. They let me know that my performance in high school will impact where I end up in college for undergrad. My high school rank-ing was 108 out of 832 students. I got 1200 un-der the old SAT I’s. I got 590 for SAT II writing, 700 something for SAT II Math II C, and perfect for SAT II Chinese (which for me should be a piece of cake given that I am a native speaker). I ended up in University of California, Riverside. It was a decent four-year college. Had I done better in my high school ranking and SAT I’s, I would have ended up in a better school.

2. They outlined courses I would take during my four years in high school. I ended up fol-low their predictions 90-95% of the time. While I would have known the courses that pretty much everyone had to take in high school, I would not have known the importance of getting into as many Honors and Advanced Placement courses as I could. Moreover, I got to know what courses would be easy and what courses would be hard. Finally, I knew what I needed to do to get into the Honors and Ad-vanced Placement classes.

3. They mentally prepared me when I should take my SAT’s. Studying the SAT’s on top of school was overwhelming. Knowing when the SAT’s would be at least allowed me to study for it when my school work was not heavy. Also, they showed me facts on the “magic numbers” needed for my SAT’s to get into the schools I wanted to go for undergrad. Considering I had 3 Advanced Placement and Honors classes combined in both my junior year and senior year, it was hard to balance my time. (Had I also joined clubs, however, it would be even more difficult.)

What my parents had missed?

1. I did not know the importance of joining after school clubs. Aside from more avenues to make friends, it would have been valuable in filling in my college applications for the col-umn under extracurricular activities.

2. My parents did not know the reasons be-hind my social skills struggles. Granted, they did not know about my Asperger’s at the time. That said, they only offered possible ways to improve my social skills instead of understand-ing the reasons behind that first. Looking back, it was a flawed approach because it only tried to deal with problems that were apparent on the surface, as they missed the psychosocial component.

My take home point- Eighth grade is a very critical year for your autistic child, especially if he/she is mainstreamed. He/she should:

1. Learn how to advocate for himself in the classroom to his/her teachers. He/she has to know what accommodations (if any) are in place for him and why. That way, he/she can put him/herself in the best position to succeed.

2. Learn how to be responsible for his/her own grades. If your child has struggles calculating where he/she stands currently, get informa-tion from his/her teachers and then you can do the calculations on not only where he/she stands, but also the best possible grade from this point forward and the grade he/she de-sires to get. Although doing so can provide stress (especially if it’s something that is very unlikely), it also is concrete information that will be helpful for your child. After a few times, though, you should get your child to do this as independently as possible.

3. Be part of planning what high school classes he/she should take. While there are required classes for your child to take, there are also classes where he/she can pick to take. This can be overwhelming process. You can have your child determine his/her objectives first- such as a dream school for undergrad, before select-ing these classes.

4. Identify where to go for college for under-grad (if applicable). This is important because identifying his/her own “dream school” will give

40

your child a sense of responsibility in planning for his/her future.

As for parents, I would suggest you:

1. Set reasonable expectations for your child in terms of high school performance and “dream school” for his/her undergrad stud-ies. For example, if your child is getting B’s and C’s consistently in middle school, don’t set your bar so high for him/her to be number one for his/her high school class and get into Harvard for his undergrad. If your child has high expec-tations for him/herself, then tell them straight about what they should do through research-ing the information together. If your child is aiming too low, however, you should help set a more reasonable expectation.

2. Equip your child to be a self-advocate. You can’t be with him/her in college, as he/she has to ask for the accommodations him/herself. So, why not get him/her some time to learn about him/herself?

3. If social skills are still a challenge for your child, you should start to understand and provide solutions. High school can be a time where he/she can meet new people. Getting him/her to make friends early can not only help him/her academically, but also in quality of life.

4. Have someone older to orient your child to high school life- older sibling or someone you trust in the community. I felt some differ-

Bio

Bill is a licensed occupational therapist in Califor-nia. He is planning to make a transition to become an autism life coach. He received his masters and clinical doctorate degrees in occupational thera-py from University of Southern California in 2011 and 2013, respectively. He is believed to be the first autistic individual in the world to receive a doctorate degree of any kind in occupational therapy, as he was diagnosed with Asperger’s Syndrome in 2010. Bill has presented 8 times in local, national, and international occupation-al therapy conferences. He also was a guest on American Occupational Therapy Association (AOTA)’s Pediatrics Virtual Chat, and Autism Live web show, OT Go To podcast. His immediate pro-fessional goal is to be part of the AOTA’s Emerg-ing Leaders Program within the next two years. His long term professional goal is to be an AOTA fellow and deliver an Eleanor Slagle Lecture at a future AOTA conference.

TEENS

ences between middle school and high school. Fortunately, my math classes gave me a good taste, as they were conducted in a local high school. So, I wasn’t as stressed in adjusting to a new routine than I otherwise would have.

While these are by no means a complete list of sug-gestions, I believe they are enough for you to in-crease your child’s success.

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