He Has “Mastered” This Skill at Home; Why Doesn’t He Do It Anywhere Else?

This article was contributed by Louise Southern of ASNC’s Clinical and Training Department.

Long ago, I worked with a young child who could answer a variety of social questions such as “What’s your name?,” “Where do you live?,” and “What is your mom’s name?,” but he could only answer the questions under certain conditions. When asked the questions at school by others, or when the phrasing of these questions was varied, he struggled to respond. What was happening here was a classic problem with generalization.

Generalization is the process of transferring skills or concepts taught in one set of conditions to other conditions. This includes transferring the skills into other settings, to other people, to other materials, formats, and to other activities. It often involves making connections between representations, responses, or things in order to see a broader, “big picture” concept. Generalizing skills from the teaching context to real-life applications is incredibly important. A skill “mastered” in the classroom or “mastered” in the home setting but not applied to real-life situations is not particularly functional. Despite its importance, the process of generalization is sometimes treated as an afterthought, rather than carefully considered when a new skill or response is first taught.

When we think of generalization, we most often think of generalizing a skill from one setting into other settings. For example, we might teach an individual how to ask for help when needed in the classroom. This skill of asking for help must then be transferred, or generalized, into the home, the community, and the workplace so that the student is able to ask for help in those settings as well.

Additionally, an individual with Autism Spectrum Disorder (ASD) may associate a certain skill with the person who taught him that skill. They may struggle to generalize that skill to other people. Using the same example as above, a student may learn to ask for help from one teacher, but does not use the same skill when she needs help from other teachers, her supervisor at work, or her mother at home. She associates asking for help with one teacher. Thus, generalization must occur not only to other settings, but also to other people.

Furthermore, some with ASD may associate a particular response with a particular item, question, statement, exemplar/representation, or object. If the behavior of asking for help is associated with the question, “What do you need?” then the individual might not ask for help unless we first ask that question. In reality, this question is a prompt upon which the individual might become dependent. Generalized communication of “help” when needed is not likely to occur when this is the case. Furthermore, “help” is a concept that has many contexts and many variations (e.g., I need help when I am lost, I need help when I run out of paper, I need help when I don’t understand the instructions, I need help when I am behind on a deadline, I may need help when I am sick). Thus it may be necessary to support some individuals in connecting varied circumstances so that over time, they develop a working concept of help. Developing that concept of help can support the individual in correctly identifying when he might appropriately ask for help in new situations.

As professionals working with individuals with ASD, we must take systematically arranged and integrated steps to promote generalized responding across contexts. Here are some basic guidelines to consider:

  • Plan for generalization right from the start. When you select a skill or concept to teach, consider the end goal, so you know what you are working toward. Is this skill relevant in more than one context?
  • Provide close monitoring, feedback, and prompting (prompting that is quickly and systematically faded) along the way. Each new condition should be viewed as a new instructional context in which you carefully arrange opportunities for the individual to experience success practicing or displaying the new skill.
  • Teach the skill in a familiar setting with a familiar person and then practice the skill with multiple people under natural conditions. Practice the skill with multiple people, such as other instructors, peers, co-workers, and family members. The more variation, the better. Generalization involves the careful arrangement of increasingly novel and varied opportunities for the individual to experience success practicing or displaying the skill.
  • Practice the skill in multiple settings in which the skill would be naturally expected. Some with ASD may form associations of who and where to engage in certain behaviors. Specifically, they may associate a certain skill with the location in which it was taught, rather than gaining a broader “big picture” perspective of the skill. Thus, teaching the student the skill in multiple settings is crucial.
  • Target the skill or concept using multiple materials, examples, stimuli, and representations that are naturally embedded in the environment. When you are teaching a skill that initially involves particular materials, stimuli, or examples, it is important to quickly and systematically introduce multiple and varied representations of that concept. For example, if a child is learning to identify numerals, it is important in many cases to systematically introduce and teach various representations of the numeral (written, foam numbers, Play-Doh in shape of the number, on the board, in books, etc.). In this way, the child obtains a generalized concept of each number and can recognize it under various conditions. As another example, if you are teaching an individual to distinguish between safe pedestrian cross walk areas versus no-cross zones, you cannot simply target one particular intersection in that community and assume that he will then correctly discriminate between safe and unsafe areas. It would be important to teach the individual to recognize and respond to multiple versions of a crosswalk zone (and of course in multiple community locations).
  • Similarly, be sure to teach a wide variety of responses and give ample opportunities to practice those different responses. This will support the individual in generating a response in new situations, because he or she may have a range of options from which to “pull,” based on the situation. For example, if you are working with an individual on social initiations, there are a range of initiations that you might teach, such as “What are you doing?,” “That looks fun,” wave and smile, and “Can I try that too?”.
  • Arrange reinforcing consequences that are likely to occur naturally in the generalized contexts. When possible, it is important to arrange and deliver reinforcing consequences that are naturally related to the skill or response you want to see. When the consequence is one that is naturally connected to the behavior, it is more likely that this behavior will generalize to other contexts because those same contingencies between behavior and consequence naturally exist in those other contexts. For instance, if you are teaching the skill of asking for help, the reinforcing consequence that naturally relates to that behavior would be receiving the help that was requested.
  • Arrange reinforcement to occur intermittently (not every time), as it would in the natural environment. In the “real world,” social skills and other responses are not always reinforced. For instance, sometimes we start a conversation with someone and it takes off. Other times we may try and it fizzles pretty quickly. So while in the early stage of skill acquisition we may need to reinforce a behavior a skill every time it is performed, we need to quickly shift to a pattern of reinforcement that is more naturalistic, more intermittent, and somewhat randomized. This matches what we experience in natural contexts.
  • Review strategies directly before the individual is to perform a particular skill or response. Practice, role-play, and rehearse with them. Review any visual supports (e.g., a visual support that identifies an array of appropriate topics of conversation; a set of reminders or rules; a social story) that have been developed in relation to this skill or behavior that you are working to generalize.

Many practitioners and researchers have developed resources and curricula that address issues related to generalization of socio-behavioral skills and the development of “big picture” social cognition. A few to check out in the ASNC Bookstore include but are not limited to Jed Baker’s Social Skills Training and Social Skills and Frustration Management manuals, and Michele Garcia Winner’s Social Thinking™ and Superflex™ manuals and related resources. In addition, a number of assessments and curricula provide evidence-based strategies to promote generalized responding, particularly in young children with autism. These include but certainly are not limited to The Early Start Denver Model for Young Children with Autism, An Early Start for Your Child with Autism, How to Do Incidental Teaching, and Pivotal Response Treatments for Autism.

Louise Southern M.Ed., BCBA, a member of ASNC’s Clinical and Training Department, can be reached at lsouthern@autismsociety-nc.org or 919-743-0204. ASNC’s Clinical and Training Department staff is composed of PhD and master’s-level licensed psychologists, Board Certified Behavior Analysts, and former special education teachers. We provide individualized intensive consultation using evidence-based practices to support children and adults across the spectrum in home, school, employment, residential and other community-based contexts. We also deliver workshops to parents and professionals on a wide range of topics including but not limited to, strategies to prevent and respond to challenging behaviors, best practices in early intervention, functional communication training, and enhancing social understanding in individuals with autism.

Peer Programs: A Win-Win Proposition

This article was contributed by Wanda Curley, an Autism Resource Specialist and mom to a son with autism.

 

“When we love and respect people, revealing to them their value, they can begin to come out from behind the walls that protect them.”
– Jean Vanier, “Finding Peace”

 

Ryan Curley and one of his friends at graduation

Ryan Curley and one of his friends at graduation

This past year, our son with Autism Spectrum Disorder (ASD) turned 22 years old, reaching the end of his school years and heralding the beginning of his official transition to adulthood. The occasion was quite monumental for us, and one that caused quite a bit of celebration and reflection. As many “autism parents” do, I immediately began to reflect back over the years of IEP meetings, evaluations, conferences, meetings, etc. One of my first thoughts after the initial, deep sigh was regarding what, if any, advice I could offer to a new parent or, for that matter, any parent who was still on this path to adulthood with their loved one. It did not take me long to come up with an answer to that question, and this will be the topic of this article.

If there is one thing from our personal experiences that I would suggest that parents advocate for, it is that their child have a chance to reap the benefits of some type of peer-based program. This programming is often inherently accessible to children already in inclusive or totally mainstreamed settings, but I want to emphasize that it is just as important to our children who spend their educational years in a more self-contained setting. I believe all individuals with ASD can benefit from some type of peer programming at every “age and stage.” I also believe it is most ideal when this type of programming can be started at a very early age and continued on through adolescence and into adulthood. Of course, thanks to the IDEA policies of the past several decades, federal law now promotes inclusion for our children to the greatest extent that is possible for them from ages 3 to 22. I think, however, that a good peer-tutoring program can take simple inclusion a step further and actually go beyond the basics of being just included in a mainstreamed setting for the sake of mainstreaming. I believe good peer programming is essential and leads to something many take for granted in this world: pure and simple friendship.

So what exactly might a good peer program for a student with autism look like? Basically, a peer-tutoring program is when a student with autism (or any disability) is paired with a neuro-typical student, both in structured teaching settings as well as in the informal social settings of the educational environment. The hope is that the peer interaction will serve a variety of purposes for the student with ASD, not only providing some help with educational deficits for the student, but improving social skills and two-way communication. It can also provide a better understanding of empathy and socially appropriate behavior. Research on this topic points to the benefits of improved cognitive abilities for the children with ASD, particularly for younger children. However, the most important outcome is expansion of the child’s social circle and an overall broadening of social skills and inherent self-esteem. These latter outcomes, although difficult to measure, can certainly be lifelong benefits for both individuals involved.

Perhaps the greatest benefit of any truly successful peer program is more evident in the outcomes described by the tutors themselves. Some of my son’s tutors in the past few years have stated that they learned so much more from him than they had actually been able to teach him. They have spoken about the way they learned to look more at the ways that they were similar to him rather than different. They said that they started out thinking they were doing him a favor, yet he made them feel better about themselves in the process. Some of them have stated that somehow as they watched him struggle and overcome with their help, they were able to realize how fortunate they were in their everyday worlds, and they were inspired to give back and to seek out others like him who needed their help and understanding.

Like many parents of a child with autism, I remember soon after receiving our son’s diagnosis that one of my first real fears or concerns was that he might never know the joy of having a true friend. After hearing from several of his “tutors” (now simply referred to by me as his “friends”) that he was one of their best friends and that they would continue to keep in touch with him even after graduation, I realize that fear is thankfully not a reality in our lives. This is huge! I believe this reality is thanks to a successful peer-tutoring program and the remarkable ability of some young people to look beyond differences and embrace the similarities we all share as individuals on life’s journey. Whether we are parenting a child with a disability or a neuro-typical child, we understandably want to help that child live as independently as possible. I believe, however, that it is also just as important to teach our children that with all of our differences and unique abilities, we are always stronger when we stand together rather than apart. Peer programming does just that: helps us realize that whoever we are, we all rely on others to help us along in this journey of life. Regardless of whether our child has been directly affected, all of us have probably heard the sad stories of how bullying in schools has increased in recent years, most specifically among our children with disabilities. How much of this bullying could be avoided if every public and/or private school in this country had peer programming of some type? I believe this type of programming could have a huge impact on students of all ages and could lead to greater understanding and awareness of disabilities, development of strong friendships, and a reduction in bullying problems.

So if you are a parent reading this article, what are some things you can do to advocate for a peer program at your child’s school?

  1. Get involved! Make yourself known and available to the principal and your child’s teachers. If possible, volunteer when and where you can, both during and after school.
  2. For parents of elementary children, start early to advocate for opportunities to educate students on autism and/or other disabilities. Donate a book on understanding differences to your child’s library or classroom. Even better, go and volunteer to read the book and educate the students yourself. (The ASNC Bookstore staff would be thrilled to help you find appropriate books for this purpose. To see some of them, click here.)
  3. Talk to the principal, guidance counselor, and/or other staff about what peer programming might already be in place. If there is none, ask whether they would be willing to collaborate with you and a group of parents and professionals to get something in place, whether it is a tutoring program during the school day that pairs a child with ASD with a typical peer or for afterschool functions like parties, sports events, the prom, etc. Start with whatever you can get approved by your child’s school.
  4. Advocate that all peer tutors receive some sensitivity training before they are involved in the program. Help foster the mentality that a tutoring program is not necessarily something they must participate in but rather that they should want to do so. The most successful peer tutors usually feel that their participation is a privilege that does not come lightly and without some responsibility on their part.

Once a program is up and running, sit back and watch the meaningful relationships that develop in this win-win situation. Offer plenty of opportunities for the typical peers to reflect and share what the peer programming has meant to them. At our son’s graduation, his friends wrote for us a book of reflections on their friendship with him and all that he had taught them about friendship and life. It is a gift I will cherish forever, and I wish the same for all my fellow warriors/parents. I hope many of you will seek to make this opportunity available to your child, as all of our children have so much to offer the world and deserve the same opportunities for friendship that every person has. Good luck!

Wanda Curley can be reached at 336-333-0197, ext. 1412, or wcurley@autismsociety-nc.org.

Free Workshop: “Autism: How Faith Communities Can Help”

Practicing one’s faith is important to many families of children and adults with autism and other disabilities. Families often turn to their faith communities for understanding, acceptance, and support as they work to meet the needs of the person with autism and understand his or her strengths and gifts. Yet often they struggle to find a faith community that will welcome and include them.

Many faith communities want to help these families. They recognize that their communities are missing the presence and participation of people with autism and their families. Yet they lack an understanding of autism and feel unequipped in the best ways to include families in the life of their faith community.

We hope to bridge this gap by inviting both families and faith community leaders and members to a free workshop, Autism: How Faith Communities Can Help. The workshop will be held Oct. 25 from 10 a.m. to 3 p.m. at Manna Church, 5117 Cliffdale Road in Fayetteville. Registration, coffee, and exhibits will open at 9:30 a.m. Lunch will be provided. Childcare is not available.

At the workshop, participants will:

  • Learn about autism and the challenges families face
  • Understand the importance of screening and early identification of autism
  • Connect with community resources for assistance
  • Learn from a panel of church representatives who are working in special-needs ministry
  • Learn how they can welcome and support families in their faith communities

To register for the workshop, click here. For more information, contact Maureen Morrell at mmorrell@autismsociety-nc.org.

A follow-up workshop in February will provide more in-depth training on the strategies that special-needs ministries can use to welcome and include people with autism.

Funding for this free workshop comes through a grant from AMCHP (Association of Maternal & Child Programs). There is funding for a second workshop in Robeson County next year. The purpose of the AMCP grant is to promote the CDC’s “Learn the Signs. Act Early.” This campaign is aimed at improving early identification of children with autism and other developmental disabilities so children and families can get the services and support they need.

Four organizations are collaborating on this workshop: the Autism Society of North Carolina, the Autism Society of Cumberland County, the UNC-CH Carolina Institute for Developmental Disabilities and the UNC-CH Allied Health Science Department.

ASNC hopes to work with its Chapters and Support Groups to offer this workshop in other places across the state next year. Please contact Maureen if you are interested in helping with this effort.

We Can Work Together to Stop Bullying, says D.J. Svoboda

DJ at WAAAD

D.J. Svoboda is an artist and motivational speaker who lives in Cary. He created The Imagifriends of Imagiville based on experiences he faced as he grew up with autism. In honor of National Bullying Prevention Month, we’ve asked D.J. to tell us about his creations and motivation.

Why did you create Imagiville and The Imagifriends?

I Created The Imagifriends and Imagiville because it is all based on the Challenges that I have faced growing up with Autism and Disabilities. There were times when I was Bullied and Made Fun of and called Bad Names and Teased a lot. During those times it was quite challenging and it did also hurt a lot. But out of all these Challenges I was inspired and got The Idea to Create The Imagifriends of Imagiville. I even had some Friends with Autism that were also being Bullied too, I felt that it was just not right! Imagiville is where everyone is accepted and welcomed for who they are. There is Never any Bullying or teasing or being Made fun of in Imagiville because….. BULLYING IS NEVER OKAY AND IT IS NOT ACCEPTABLE!!

What is the main mission of The Imagifriends?

The Main Mission of The Imagifriends is to Prove and to show The Whole Entire World that all those with Autism and Disabilities and Special Needs are very, very Special and Wonderful and Amazing People too! That they too can make a Great and Amazing and Very Powerful Difference in this World and that they can use their Gifts and Talents to make this World an even Better Place for Everyone and that they too have a Great and Amazing and Very Awesome Place in this World. Also another Great Part of the Mission is to show how Important it is to Accept others for who they are and that we can all make the World an even better place by working Together as a Great Team and using our Gifts and Talents and that we can all work together to put a Stop to Bullying.

Tell us about some of The Imagifriends: their names, their personalities, etc.

Mupperezmo-webThe Mupperezmo – The Mupperezmo is The Great Leader and Mascot of The Imagifriends and the Mickey Mouse of our Whole Mission. He was Created based on the Very Important Fact that all those with Autism and Disabilities and Special Needs Think and Feel and See Things and The World and Life Much more Differently, even from a Very Different Point of View. Which is Exactly why He turns His Head Upside Down, so that He can see Things from a Very Different Point of View.

The Shy Friend – The Shy Friend is very Shy, but He is also very Friendly and Kind. He is so Shy that He always wears a Lampshade on His Head and Often likes to be by Himself at most times. He teaches that it is okay to be Shy Sometimes, If You Feel Shy Sometimes that is Okay! It is Nothing to be Ashamed of!

The Silly Clown Friend – The Silly Clown Friend is super Friendly and also very Silly. He loves to Bring Laughter to everyone and everywhere He goes. He Loves to Juggle very Soft Rubber Balls that have very Bright Colors and He also loves to make Silly Sounds. He teaches that it is Very Important to be Yourself and that it is Great and Awesome to spread Laughter and Joy Everywhere. Not Everything has to be taken so Darn Seriously! Be Yourself and Be Silly and Spread Joy and Laughter!

luciaLucia The Flying Cow – Lucia is a Very Sweet Cow who loves to Fly in the Nighttime Skies of Imagiville where The Moon and Stars of Imagiville shine so very Bright. She Never has a Care in the World and She Never Worries Either. She teaches that it is Never Good to worry, because there is nothing to worry about and that it is important to be carefree because a Situation is never Permanent, Situations are just Temporary and some great and Amazing and Awesome always comes out them. No Reason to worry at all!

What would you tell children with autism who feel alone or even bullied?

I would say, Listen, You are Never, Ever alone! You are very, very Special and Very Wonderful for who you are. It is not your fault that some choose to Bully. It is their own Fault and not Yours! You have a Very Amazing and Awesome and Wonderful Place in this World. You can even fulfill your Biggest Dreams and Goals! You can make a Very Powerful and Amazing and Very Incredible Difference in this World. Do not be afraid to tell someone about others who make fun of you! It is not Squealing, It is Reporting. Tell your Teachers and Parents and Friends about the ones who make Fun of You! Bullying is Never Okay and You Never Deserve to be Bullied! You are Very Special and Very Amazing and Wonderful!!

What do you think people – teachers, parents, and friends – can do to help individuals with autism so they do not feel alone or bullied?

13606812445_2cf25b934b_mI Think that Teachers, People, Parents and Friends should always give others with Autism Great Encouragement. They should let them know how very Special and Very Wonderful they are. They should say that they are Never alone and that they are there for them. It is also very Important to take a Great and Incredible Stand against Bullying Once and for all and they must always let those with Autism know that they are never alone and that they can do Great and Amazing and Very Wonderful Things. Most of all, Give them lots of Great Care and Support and Inspirations and Encouragement and Great Hope! It can and will make a Very, Very Powerful Difference for all those with Autism and Disabilities and Special Needs Around the World!

To learn more about D.J. and The Imagifriends, go to http://myimagiville.com/.

ASNC Offers Free JobTIPS Classes

JobTIPS has begun in Greensboro

JobTIPS has begun in Greensboro

October is recognized as National Disability Employment Awareness Month by the U.S. Department of Labor. The national campaign aims to raise awareness about disability employment issues and celebrate the contributions of America’s workers with disabilities.

The Autism Society of North Carolina has made it a priority to help individuals with autism to secure and maintain meaningful employment, and recently was awarded a Walmart grant to expand our Employment Supports department. Part of that effort is providing the JobTIPS vocational program without cost to participants in three regions.

JobTIPS helps individuals with autism who are more abstract thinkers, such as individuals who might consider themselves high-functioning or who were diagnosed with Asperger’s Syndrome or PDD-NOS, obtain the necessary skills to gain meaningful employment, including the social skills that are critical to identifying, applying for, securing, and maintaining employment. JobTIPS emphasizes peer support as participants share experiences and advice, role play scenarios related to obtaining and keeping a job, and work on resumes.

The JobTIPS vocational program lasts 12 weeks, meeting once a week, and has a value of more than $300. ASNC is admitting participants on a rolling basis, so individuals can apply at any time.

To learn more about a free JobTIPS program near you, please use the following contacts:

When sending an email, please include the following information:

  • ​​Name, age, and contact information
  • Diagnosis information
  • Known supports needed to ensure successful participation in JobTIPS
  • Employment history (volunteer experiences, etc.)

 

Voting: What You Need to Know for the 2014 Elections

vote button

Election Day falls on Tuesday, November 4, and early voting sites will open Thursday, October 23. North Carolina voters will elect candidates for a variety of offices, including the General Assembly, Congress, state judgeships, and others. Below are a few things you should be aware of since new voting laws were passed in 2013.

You do not need to show photo ID to vote in this election. However, starting in 2016, you will need to show a photo ID to prove your identity at the voting site. This year, elections staff may ask you whether you have ID, show you examples of the kind of ID you need in 2016, and ask you to sign a form saying that you understand that you will need to get ID if you don’t have it. You can get a free, non-driver’s ID through the NC Department of Motor Vehicles.

If you are not registered to vote in North Carolina, or are a first-time voter, you must register to vote 25 days before the election. The final day to register to vote is October 10. You can check on your registration at the State Board of Elections website.

If you have moved or changed your name, you must update your registration and voter information. If you show up at the wrong polling place, you cannot vote, provisional or otherwise, at that location. You must vote in the polling place where you are registered.

  • If you have moved to a new county, you must register your new information 25 days prior to the election: October 10.
  • If you move within the same county, or change your name, you can still update your information during early voting that begins on October 23.

There are new rules and assistance available for absentee voting. To get more information than is provided here, click here.

  • Voters must request an absentee ballot with the Absentee Ballot Request form on the State Board of Elections website.
  • You cannot write a letter to request a ballot. The last day to request a ballot is the Tuesday before the election, in this case, October 28.
  • The voter, a near relative, or a guardian must provide the voter’s date of birth and ID information.
  • The absentee ballot must be witnessed by two people over the age of 18 or one person who is a Notary Public.
  • Voted ballots are due by 5 p.m. the day of the elections. You can take them to the local board of elections, mail them (postmarked by 5 p.m. Election Day), or walk them to the polls. Voted ballots may also be returned to one-stop voting sites during early voting.

Restrictions have been placed regarding who can assist a voter living in a licensed facility such as a nursing home, adult care home, or other facility. Staff and owners of those facilities are barred from providing assistance to the voter. If a guardian or near relative is not available to assist the person, the voter can request help from the local board of elections Multipartisan Assistance Team (MAT). The MAT can help with requesting an absentee ballot, as well as filling out and submitting the ballot.

Multipartisan Assistance Teams in your county are looking for registered voters to volunteer their time to assist absentee voters. Volunteers who have experience with individuals with disabilities are especially needed. Consider contacting your local board of elections to volunteer.

Early voting sites operate October 23 to Saturday November 1, and are open from 7 a.m. to 8 p.m. Check with your local board of elections for early voting locations and times of operation.

If you have questions about public policy issues, please contact Jennifer Mahan, Director of Advocacy and Public Policy, at 919-865-5068 or jmahan@autismsociety-nc.org.

Don’t Underestimate Me!

This article was contributed by Leica Anzaldo, Training Manager for the Autism Society of North Carolina.

Danny track“Good morning everyone, I’m Danny. I want to tell all of you thank you for helping me and talking to me even when you knew I could not find the words to talk back. Having autism is very hard and lonely. It’s like being trapped in your own head. You understand what is going on but can’t participate. I have had a wonderful time at Lakeshore Middle because of all of you. I’m sure none of you will truly know how much you have affected my life. I hope to see all of you at Lake Norman High School.

Have a great summer!”

This was the speech given during 8th grade graduation by Danny, the son of my neighbors and friends, Sue and Rich. Many of the kids at Danny’s school didn’t even know he could talk and certainly didn’t know that he was so aware of all of them. Needless to say, there wasn’t a dry eye in the place, and many new friends were made as a result.

Danny and his family regularly inspire me to continue my work in the field of autism but also teach me things I never would have considered if I didn’t have them in my life. I am truly lucky.

Danny was diagnosed as “severely autistic” when he was almost 2 in New Jersey, where his family was living at the time. But Rich and Sue knew something was wrong much earlier than that. They remember how Danny would lie quietly on the floor for hours, pushing one of his trains around the corner of a wall until it would disappear. Then he would peek around that corner with a look of amazement that the train was still there. These rigid patterns of play were consuming. Not only that, Danny wasn’t seeking out the attention of his parents like most 1- to 2-year-olds do fairly constantly. Danny was beginning to use some words, but they were mostly from songs. He would never ask for anything – even with body language – nor would he make eye contact with others. He also had extreme bouts of crying when in crowds or when exposed to smells such as perfume. These are all very common early experiences for children with autism.

The family moved to New York, where Applied Behavioral Analysis (ABA) services for Danny were immediately available. He began receiving ABA therapy for 25 hours a week in their home, plus physical, speech, and occupational therapies from ages 2 to 4. He was then enrolled in a school for kids with autism. The school had a curriculum based on ABA interventions and very low student-teacher ratios, and Danny attended until he was 12. This intensive therapy provided the platform for learning that Danny needed, but this isn’t the only contributing factor to Danny’s success. His family and their approach to his autism were and are key to moving Danny forward.

Sue and Rich never let Danny’s autism get in the way of trying new things, pushing him outside his comfort zone and treating him much like their other two children. They say it was hard because he was fairly nonverbal and they were never sure how much Danny was understanding. However, it was so important at an early age not to allow Danny to develop rigid patterns of play or behavior. For example, he was very focused on Thomas the Tank Engine as a child and made elaborate tracks throughout the house but didn’t want others to play with “his” track. Sue and Rich would walk by and change a little bit of the track or take a piece away, getting Danny’s attention. They would then turn his play into a social game of chase or hide the track, waiting for Danny to vocalize “where is it.” Then they would show him the piece and encourage him with “come and get it”; a game of chase and tickling would ensue.

Now mind you, Danny never responded with aggression, so this may be very different from how other children respond. But even during my own observations, Danny uses the most language when he is pushed to the brink of frustration, and this is when his language is clearest and most precise. Rich teasingly puts Danny in a bear hug and asks him a bunch of questions, not letting go until he answered, but in a playful and silly way. It becomes a game, with Danny saying “no, no, no” but with a smirk on his face.

They also exposed Danny to new experiences early, such as going to the dentist at a young age and flying on a plane at age 4. They learned and adjusted based on Danny’s response. Family members always ask why they can’t just stay home for school breaks instead of always making travel plans, to which they answer: Change is important; if we don’t change it up, Danny will stay in his room, isolated, and it will be harder to try new things in the future. It isn’t always easy and is met with resistance, but he participates and usually enjoys whatever has been planned.

Small accommodations are also really important, such as having headphones and music available for Danny when he has to wait, is in a crowd or noisy environment; having access to a movie player because movies are a big part of Danny’s life and something he looks forward to at the end of the day to unwind; boarding the plane last and exiting first so he isn’t pushing everyone out of the way; and most importantly, making sure the people around Danny know he has autism and what that means. They have always been very upfront with people in the community that Danny has autism, sometimes dressing him in shirts that say “got autism.” This helps others to not make assumptions about him based on his behavior but instead ask questions. For example, on a plane ride, Sue said loudly to the person in front of her as they were deplaning that she was sorry if Danny had been kicking his seat, but he has autism and doesn’t always understand how what he does impacts others. She said this so the other people on the plane knew, too, as Danny was making loud noises and being a bit impatient. It isn’t always easy to say that your child has autism, but Rich and Sue feel very strongly that the more people know, the better. Raising awareness and cultivating compassion in others is a huge part of their efforts for Danny. They have always gone to every classroom Danny has attended to make sure his teachers and classmates know who he is, that he has autism, and what that means for him.

Danny moved to North Carolina when he was 12 and began middle school with his sister Mickale. Mickale is also a huge advocate for Danny, making sure all her peers know Danny and understand autism. She is a beautiful person inside and out, whose relationship with her brother has affected so many other students in the area where we live. She accepts Danny’s big bear hugs in the hallway and never seems to be embarrassed by Danny’s autism, instead embracing it as part of who he is. Danny really started to flourish while in middle school. He was in a self-contained resource room except during chorus. They also tried mainstreaming for gym, but the sensory input was too much. (He would hold the locker room door closed because the other students were so loud and he wanted to get down the hall before them.) Sue also signed Danny up for the swim team and cross country, making sure all the coaches and team members knew who Danny was and that he had autism. I witnessed Danny at both and was so moved by the fact that even though Danny wasn’t the fastest nor did he always understand the expectations of each event, every person in that pool or on that course was cheering him on until he finished – even the other team.

This year, Danny started high school at Lake Norman High. He is fully included, and his parents were really nervous, but Sue met with Danny’s teachers and school staff to determine the best option for him. They assured her that he could do it and that they would be there to support him along the way. To prepare, Danny’s parents took him to check out the school layout and walk around the school preparing him visually for what was to come. Sue also downloaded a map of the school and highlighted and numbered all the rooms where Danny would go. She made a schedule for Danny that he keeps inside the front cover of a notebook with his classes, teachers, and the numbers that correspond with the map. She made a cheat sheet for inside the back cover that includes the smaller steps, such as when to go to his locker and what to do once he gets there: open, put cross-country bag in locker, close and lock, then go to homeroom, etc. She also showed him once how to unlock his locker and then had him do it four times to avoid this frustration in the future that she knew would throw off his day.

Most importantly, once again, she has made sure that people in the school know Danny and understand autism. He is running cross country at the high school level now, and practice began well before school started. Mickale also runs and has made sure the other runners look out for Danny at school and talk to him. Sue and Rich have had several students approach them and say how cool Danny is and that they “have his back.” And Danny feels like such a part of the team that after practice one night all the kids jumped in the lake and Danny was right there with them. Sue couldn’t believe it! Sue, Rich, and the rest of the family have done an incredible job making a community for Danny. Every neighbor on our street is comfortable around Danny, talking to him and inviting him to parties, boat rides, and other activities in which all the other kids are included.

I hope you don’t find this too idealistic, but I really wanted to show how true “inclusion” can look for people with autism, even if they don’t have services. Danny still has autism. A lot of his talk is movie talk, he eats the same thing almost every night (though he makes it himself), and he still doesn’t have what we would identify as a group of friends. But Danny is a genuinely happy teen who is treated by others as one of the guys. He surprises me every time we are together, and I cherish the fact that my own children are developing such compassion just by having this family in their lives.

Leica Anzaldo can be contacted at 704-894-9678, ext. 1603, or lanzaldo@autismsociety-nc.org.

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