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How Youth are Getting Involved in Supporting the Autistic Community

Group of disabled friends

It’s common to see stories on how businesses and private organizations are helping the autistic community, but you don’t have to be part of a nationwide effort in order to make a positive impact, and nowhere is this more clear than when you look at what young people across the country are doing to support others their age with special needs.

Things as simple as inviting a student with special needs to sit with a larger group at lunch or partnering with them for a school project can help a young person feel like an accepted and valued part of the broader collective - and one shouldn't underestimate the effect something as simple as that can have on a young person. However, “simple” wasn’t what students at McFarland High School in Wisconsin aimed for when they crowned Gabby Carufel-Wert, a student with autism, prom queen earlier this year - they were going for “unforgettable.” Which was exactly what they delivered not only to Gabby, but her parents as well. Terri Carufel-Wert, Gabby’s mother, commented on how special prom was for her daughter.

"She owned the crown all night long, and the sash and she couldn't wipe the smile off her face, she hasn't stopped smiling since and she went to bed smiling."

Everyone wants to feel like they’re included, and there’s no other place where inclusion and teamwork are quite as imperative as on the basketball court. So while we’re on the subject of unforgettable moments, John Abbot, a teen with autism at Fayetteville-Manlius High School, shared one with his team when he hit the game winning shot in overtime to close out a win for him and his squad. Celebrating a special achievement is always more fun when you’re able to do it with a group of close friends, and being able to do exactly that had been a long time dream of Abbot’s who had wished his whole life to someday “be on a team.”

A dream drove Blake Deanton to help students with special needs through his Eagle Scout service project. Autism is something that personally affects Deanton because his twin brother Shane was born with it. Deanton titled his project “Wings for Autism” and the ambitious purpose of it was to fund the building of a new sensory room at his brother’s middle school. The fundraising for the project went so well, however, that Deanton was not only able to pay for one, but for two fully equipped sensory rooms. Deaton’s achievements were amazing, but it is important to remember that doing something on  the scale of “Wings for Autism” isn’t required in order to have a positive impact on the people with special needs in your life. Something as simple as a smile or a hello can create that  unforgettable moment for a young person with special needs!

Share your thoughts and experinces! Tweet us @UDiscovering or leave a comment on the UDiscovering Facebook page!

The Changing Role of Autism in the Workforce

There has been a growing interest among large businesses like Microsoft, AT&T, and Virgin in bringing more people with autism spectrum disorders (ASD) into the workforce. Numerous new programs are being initiated by the aforementioned companies, and many other organizations seeking to change the stigma around hiring people diagnosed with ASD.

Employees with autism bring something unique to the workplace that goes deeper than just increased diversity. Many of the common skills employers seek in potential employees — like focus, strong data analysis skills, and attention to detail — are all traits that persons on the autism spectrum are known for possessing.

When trying to involve more individuals with autism in the workforce, there are several barriers between employer and employee that both parties have been working for years to overcome. But the biggest issue is presented during the hiring process in the job interview, which can often become an overwhelming source of stress for individuals on the autism spectrum. In response to this, employers are now creating new interview processes that cater to those with special needs.

These new interviews are focused less around the interviewees’ social skills and more on their technical skills testing their work experience and expertise. On top of this, instead of face – to - face conversations, many of these new interviews take place online. This allows employers to spend less time personally screening individuals and helps applicants feel more at ease when applying. This seemingly simple change levels the employment playing field in a major way!

So what are your thoughts on these developments? Are there other ways you think employers could improve the application process? Tweet us your answers@UDiscoveringor leave a comment on the UDiscovering Facebook page to let us know!

Having access to treatment is life-changing

Maura on Chronicle
By: Jim Fessenden
UMass Medical School Communications

Maura Buckley, MPA, former product manager for UHealthSolutions, part of UMass Medical School’s Commonwealth Medicine Division, and Amy Weinstock, director of the Autism Insurance Resource Center at the UMMS Eunice Kennedy Shriver Center, talked about their experiences related to accessing health care and behavioral services for children with autism spectrum disorder, in a segment of WCVB-TV’s Chronicle.

Watch the full segment on Chronicle: Autism: Paying the Price for Treatment

Buckley, whose two sons have autism spectrum disorder, describes the heartbreak of watching her sons lose language abilities as symptoms of their regressive autism developed.

“For both my boys, watching them develop typically and then start to lose skills is probably one of the most frightening things a parent can go through,” said Buckley.

Autism affects 1 in 68 children, according to the U.S. Centers for Disease Control and Prevention; many states are only now beginning to cover the full range of health and behavioral services for treating autism. For help, Buckley turned to the Autism Insurance Resource Center, which helps parents navigate health insurance plans to identify resources available for treating autism.

Amy Weinstock, director of the Autism Insurance Resource Center, explained the financial challenges many parents face in accessing appropriate care for their children on the autism spectrum, likening the problem to covering cancer treatment without covering chemotherapy.

“It can bankrupt you very, very quickly,” said Weinstock, who spent many years pushing to get legislation passed in Massachusetts that requires private insurance companies to cover Applied Behavioral Analysis (ABA) therapy, one of the most effective treatments for children on the autism spectrum. The bill was passed in 2012, and expanded in 2014 to require coverage by MassHealth.

“Many families tell us that having access to the behavioral treatments has enabled them to keep their children at home and to remain in the community,” said Weinstock.

Watch the full segment on Chronicle: Autism: Paying the Price for Treatment

ABA can teach in unexpected ways

Farm animals

Written by Maura Buckley

Applied behavior analysis (ABA) may not seem like the most creative therapy on the surface — but in fact, ABA can be as creative as a therapist and child want! Teaching opportunities and reinforcement options can have endless possibilities. For example, if going outside and gathering dandelions is the greatest activity in the world for your child, then an ABA program can be written to use dandelion collection to reinforce behaviors.

If your child is like mine, then they love to watch videos… maybe too much at times. But as a parent, you can harness that love through video modeling. For my son, “pretend play” was just out of his reach. He wanted to play with farm animal toys, but ended up just banging them around and getting frustrated. So his ABA therapist let him watch a video of a boy playing with some farm animals. It was a really simple video, broken down into sections that were easy for him to process.

My son LOVED watching the video, and when he modeled the same behavior he saw with the farm animals, he was thrilled (and reinforced). Not only was he happily playing (no banging or frustration), but he was able to repeat this behavior with other toys and have appropriate pretend play that he continues to enjoy to this day. I still love to hear him say “Slurp slurp, the horse is thirsty for water.” and “Oink oink, want to roll around in the mud with me?”

Video modeling is just one of the many ways your child can learn through ABA. The more you know about ABA, the more learning opportunities you open up for your child. The cues are from your kids, so go ahead and grab a few! Also, talk to your ABA providers. I bet they will be excited to work with you to implement your ideas.

If you are a DBI user, refer to module 4 for more information about video modeling and reinforcement. If you want to learn more about DBI, visit http://www.udiscovering.org/products/discovering-behavioral-intervention/autism-information-families.

For a research article on the effectiveness of video modeling, visit http://nichcy.org/research/summaries/abstract72

A special note to parents of children with autism

Young boy with autism

When I see news that autism prevalence is increasing, I immediately think about all of the parents and families trying to navigate the complex world of autism for their children. What does this diagnosis mean? Will my child ever live a normal life? Is there anything I can do to help them overcome the struggles? How can I help them get a good education? How can I help them succeed?

The hard truth is, for many families, it will always be a struggle. Autism will consume your time and attention — but your dedication and commitment WILL ensure the best possible outcome, no matter what that may be. Every positive step, and even the tiniest indication of improvement, is the most rewarding feeling in the world. And YOU, the parents, make it happen.

I want to take this opportunity, in light of the difficult news regarding autism prevalence, to give a shout-out to those amazing parents out there who are doing everything they can, never giving up, and never settling for anything less than the best possible outcome. They need our help and support now more than ever.

A chance to fit in

A chance to fit in

Shortly after my son was born, I enrolled him into a highly coveted preschool waitlist. Two years later, I got the call that he was in. I was excited for my little guy to start preschool and make some gains in his development — however he was beginning to show signs of a progressive form of autism, and we were on a road of evaluations, tests and more tests. I knew an autism diagnosis was looming, but he presented to his team of doctors in a complex way, and the jury was still out.

Day one: He looked adorable and I was feeling confident. Then as we headed toward his cubby, he got closer to me and halted. I kept calm and told myself: “He can do this! I can do this!” I gently tugged him along and we put away his things.

As the morning progressed, I was having trouble separating from him, even with the help of a very nice teacher. I finally saw an opportunity, made a quick wave to him, and headed toward the door. He seemed to be doing fine, and I smiled a bit as I passed another parent.

Then out of the corner of my eye, I saw my son grab that parent’s hand. I saw him try to pull her toward the door. She did her best to direct him back to the other kids. Then I heard the scream. He bit her… hard. Private preschools have many rules, and I guess there was a zero tolerance for biting rule.

Day one was our last day. My son was kicked out of preschool before he even began. 

This was my initiation into the challenging years of trying to find the right placement for a child with autism. Although it continues to remain a process (and probably always will), there is some light at the end of the tunnel. The fit may never be perfect, but you learn more about their needs at every step of the way. You learn about accommodations, least restrictive environment, learning supports, one-on-one aides, and more. You have the ability to provide your children with the opportunities they need and deserve, and you are their strongest advocate to help them fit in.

Fitting in is not always easy for children with autism — but every child deserves that chance!

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I incorporated these issues and topics into Modules 8 and 9 of Discovering Behavioral Intervention (DBI). If you are a DBI parent, please refer to the following chapters:

  • Least Restrictive Environment
  • Inclusion
  • Private Placements

For more information about DBI, please visit the product page: http://www.udiscovering.org/products/discovering-behavioral-intervention

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Other resources:

You know your child best — but what motivates you?

You know your child best

Parents know their children best. This is why the developers of Discovering Behavioral Intervention developed each course module in partnership with parents.

You know the types of reinforcement your child gravitates to and what they avoid. You have figured out the best environment for your child to stay calm and pay attention.  You can detect when your child is tired, not feeling well, or just off — and how these things affect their learning, communication, play, appetite, and sleep.  And… you know how to motivate your child. You already know the best way to get them from Point A to Point B.  You know how to get a response, a smile, a laugh… but what motivates you?

How do parents of children with autism keep themselves going when the hills get steep?  What really works to help parents stay motivated when behaviors are challenging and the road ahead seems dauntingly long and arduous?

As a mother of two children with autism, I personally feel incredible pride every time my children are able to triumph over a difficult episode. I am so proud of them for being brave, and I am proud of myself when I am able to help them manage their autism. Every success we accomplish together to extinguish a challenging behavior or master an important skill propels me to continue to make progress and take the next step. I know that if I stay calm and follow the plan, then I can pat myself on the back for our success and move forward feeling confident. 

However if I don’t maintain my courage or follow through, or let myself feel defeated or afraid, then my confidence and motivation slips. It’s important to remind ourselves that if we slip — such as allow an old problem to resurface, give in to a tantrum, or step in to do something that our child should do on their own — that we have to accept our error, remedy it, and continue to stay consistent for the sake of our child’s progress. Remember the confidence that you feel when you succeed, and don’t let the fear of failure overcome you.  

Finding this balance isn’t easy for anyone. Sometimes a particular behavior takes so much energy to address, that I fear I am about to completely burn out. Taking the time to address these behaviors takes determination and forethought.  Sometimes I am impatient and tired — but I have to remember those feelings of confidence and success to motivate me to move forward.

Use ABA, through Discovering Behavioral Intervention, to help you find that positive motivation. For example, when you think about establishing operations for your child (see module 2, Setting Up a Motivational Situation), stop and think about how to do that for yourself as well.

In the end, getting through any difficult situation is an individual process. Being aware of what you need and what helps you is a great place to start.  

We come together

Maura Buckley

When autism touches your life, something else may follow — isolation.  Parents of children with autism often find that isolation can overcome us before we realize it’s coming. We get consumed with trying to meet the needs of our children while attempting to keep up with life’s other responsibilities. Our heads are down reading, researching, trying to make sense of it all, and trying to make the right decisions.  Our heads are up coaxing communication, managing meltdowns, and working to accomplish our goals.  We are off and running to work, therapies, medical appointments, evaluations, meetings…and the list goes on.

Before we know it, some of our connections to the world have slipped away.  Some of the connections that remain can begin to feel less accessible and different now. And then, new connections emerge.

Families, individuals, and professionals affected by autism have an instant connection, a common goal to share information and personal stories, and a world of support. When we come together, united as a community at a conference like the Autism Society’s National Conference, these connections are embraced and new connections form.  For me, it feels like a blanket of support is thrown over us all. And then the isolation melts away.

Across the country and at forums like this conference, parents are learning from one another and from dedicated professionals.  We are able to hear directly from individuals with autism about how they navigate their worlds; we hear their thoughts, feelings, and ideas.  Professionals are able to gain a family perspective, a sense of walking in our shoes. We learn about what works for others, new innovations being developed for our children, and stories that bring us comfort or prepare us for the next challenge.  We come together and go forward together with unity and hope.

Maura Buckley
Product Developer, Discovering Behavioral Intervention

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A heartfelt thank-you to professionals who work with families touched by autism

Working with therapist

Coffee Klatch Blogger of the Week

Written by Maura Buckley, Parent and former UDiscovering Product Manager

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When my two young boys were first diagnosed with autism spectrum disorder, I remember thinking: “These are my children. I have to help them. I have to be able to manage them. I don’t need outside help.” Well, that didn’t last long.

When I opened up my home to autism professionals, they opened up our world. Their support and expertise not only helped my children, but helped me learn the powerful benefits of applied behavior analysis and the importance of partnership in care.  When you are a parent of children on the spectrum, you realize that the saying “it takes a village” couldn’t be more true. We were so lucky to have the support of so many wonderful professionals.

These compassionate and focused individuals are involved in this field because they truly want to improve the lives of our children. They understand that these children have unique challenges and often hidden strengths.  Helping families manage these challenges and uncover potential is a job that takes dedication, a great deal of patience, and a good sense of humor!

As I sit here at the Association for Behavior Analysis International (ABAI) Annual Convention in Minneapolis, I see this dedication in action — on another level.  The incredible research and innovation from this professional community is inspiring. The research being conducted and shared — including research from our own esteemed UMass colleagues — helps propel more effective intervention strategies for individuals with autism. The development of new, innovative tools and educational products directly supports children and families like my own.  

So here’s a shout out to these driven men and women for walking with us, guiding us, and letting us know that we are not alone. From research, to analysis, to hands-on treatment — there are so many ways in which these amazing people are working to make a difference in the lives of individuals with autism. My heartfelt thanks to each and every one of you!

Maura Buckley

Video Blog: Richard Fleming, Ph.D., talks about UDiscovering's new autism training resource

If you work with children on the autism spectrum, you’ll want these 10 training modules in your professional resource toolbox. With Discovering Behavioral Intervention, you’ll learn the ins and outs of applied behavior analysis and get an invaluable inside look at families coping with the challenges of raising a child with autism. DBI was created by behavioral and autism experts at the Eunice Kennedy Shriver Center at UMass Medical School. As a training resource, you can be sure that DBI covers evidence-based practices, and that the modules have been rigorously tested by parents and educational professionals. Parents will no doubt recognize themselves in DBI’s trusted parent guides. So the next time a parent or your new employee asks — “How can I learn more about autism?” — you can refer them to Discovering Behavioral Intervention.

The Massachusetts Sibling Support Network: Supporting Siblings of People with Disabilities

Emily Rubin

The following is an excerpt from an article in The Shriver Center Spotlight (Volume 5/Issue 1/Late Summer 2012). Click here to read the full article (PDF).

Growing up with a brother or sister with a disability–whether the disability is emotional or physical, visible or hidden–is a unique, often challenging, and potentially rewarding experience. Nationwide, adult siblings of people with disabilities report that the sibling experience profoundly influences their childhood and adolescence, and shapes the type of individuals they become.

“Sibling involvement has been expanding among families of people with disabilities for several reasons,” explains Emily Rubin, Director of Sibling Support at the Eunice Kennedy Shriver Center. First, people with disabilities today have significantly longer life spans due to medical advances and overall improved health, often outliving parents who serve as primary caregivers. Second, since deinstitutionalization in the 1970s, people with disabilities are living at home longer, creating stronger sibling relationships. Third, state and federal funding options are decreasing, and sibling involvement is a natural outgrowth of cost-saving measures.

The Massachusetts Sibling Support Network (MSSN), of which Rubin is co-founder and president, emerged from concerns about the impact of disability on siblings, especially adult siblings who serve as primary caregivers, but also young siblings who are growing up alongside brothers and sisters with different abilities and needs.

Origins of the MSSN trace back to 2009, when an exploratory committee investigated the needs of siblings of people with disabilities across Massachusetts and the types of supports that existed to meet those needs. The committee soon expanded into a diverse network of adult siblings, parents of young siblings, mental health professionals, and sibling service providers, all connected to sibling issues on a personal or professional
level. In 2010, the committee evolved into the MSSN. Its mission is to support siblings of people with disabilities across the siblings’ lifespans by providing education, creating welcoming communities, and improving the range and availability of sibling support services in Massachusetts.

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Rubin explains that the sibling experience is influenced by many factors including parental attitudes toward the child with a disability. In general, the more accepting parents are of the child’s disability, the more accepting the siblings will be; likewise, if parents are angry or in denial about the disability, those sentiments tend to trickle down to the siblings as well. Other factors that affect the sibling experience include the
severity and type of disability, characteristics like birth order, sibling gender, and family size. Family culture also plays a large role; “culture” refers not only to ethnicity and race, but also independence, interdependence, caregiving expectations, and communication styles.

Rubin adds that sibling issues change in scope as siblings age. Young siblings may struggle to understand the impact of their sibling’s disability on their family, while adult siblings may find themselves navigating complex healthcare, housing, employment and benefit systems previously managed by parents.

Read the full article. (PDF)

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With autism prevalence growing, more families need support and education

Maura Buckley

You don’t need to look at new Centers for Disease Control and Prevention (CDC) survey results to know that the prevalence of autism is increasing. As a parent, I see it every day. The waiting lists for autism-related services are longer, resources continue to tighten within our schools, health care providers are under increasing demands, and many families struggle to find access to appropriate therapies.

When my two boys received their autism diagnoses, I wasn’t prepared. None of us are. They needed intensive therapies that were not very accessible, and my insurance at the time didn’t provide the coverage that we needed. It was difficult to know where to turn. I approached legislators, educators, advocacy groups, medical providers — anyone that I thought might provide some direction. The road of a parent with children affected by autism is a road of vigilance, love, determination, advocacy, and tremendous financial burden.

I was fortunate to find experts who understood and communicated the importance and effectiveness of applied behavior analysis (ABA). They helped me understand the terminology, debunked the myths, and gave me the confidence to keep learning. I learned as much as I could about ABA, so that I could help my children learn more effectively and give them the support they needed to thrive.

Breakthrough

When my youngest son turned five, he began to speak. He started counting, then he recited objects, and then one day, he said “I love you Mama.” This was an incredible breakthrough after years of intensive therapy. With ABA, he continues to make huge strides and his success continues! My eldest son is nonverbal, but with ABA he learned to communicate with an iPad, manage his behavior, and become more independent. They both make me so proud, every day.

Don’t wait to educate

To help families get access to the right ABA resources, I partnered with child development experts from UMass Medical School’s Eunice Kennedy Shriver Center to develop an ABA learning guide with a parent voice. Discovering Behavioral Intervention: A Parent’s Interactive Guide to ABA demonstrates real-life situations and strategies, framed through the eyes of parents who go through the same struggles that we all do. The education and tools that Discovering Behavioral Intervention provides are priceless when you see the results. I’m so excited to get this product into the hands of parents everywhere who are on the road of the complex journey that is autism.

With the potential of 1 in 50 children being on the autism spectrum, it’s all too clear that families are in more need of support now than ever before. Don’t wait, get involved, educate yourself, and help your child or children reach their greatest potential.

Maura Buckley, former Product Manager
UDiscovering

The very first time…

Maura Buckley

An autism diagnosis can be devastating, but you can help change the trajectory.

As the mother of two children with autism, I know how confusing and heart-wrenching an autism diagnosis can be. You hear unfamiliar terms like high functioning and low functioning, pervasive developmental disorder, on a spectrum, etc. Yet all you can understand is that you know something is wrong, and you want to do everything you can to make things better for your child.

The very first time I heard the diagnosis was the most terrifying moment of my life. One moment I had a normal, talkative child — and then at age 18 months, his vocabulary disappeared, he stopped making eye contact, and his behavior began to change. He was diagnosed with regressive autism, a type of autism that begins to show signs at around 12-30 months of age. Shortly after when my second son was born, they knew immediately that something wasn’t right. Before long, we had two sons on the autism spectrum.

As a parent, you are faced with never-ending challenges. For me, the worst were tantrums, aggression, and their inability to communicate effectively. On top of that are the constant visits to doctors, emergency rooms, and behavioral professionals — and sometimes, it feels like nothing is helping or will help. And I needed help.

I decided to begin by educating myself, so that I could learn to help my children and better cope with the challenges. I learned about applied behavior analysis (ABA), the importance of positive reinforcement, the educational rights for children, and how I can work with schools and professionals to provide the most appropriate interventions.

Learning about ABA gave me the tools that I needed to teach my children by breaking each task into small steps. And best of all, ABA changed the behavioral trajectory of my children. They made incredible progress, and still are!

Later on, I was fortunate enough to contribute my real-life experiences to help write and develop an online-learning program for parents called Discovering Behavioral Intervention (DBI). I worked with child development experts at UMass Medical School’s Shriver Center to give a parent voice to the essential ABA tools and resources within the program. I know that parents will begin to feel more confident in helping their children once ABA becomes more natural to them, and they will be empowered to advocate for the most appropriate and effective services.

I am honored to help spread the word that DBI is now available for parents. If you are a parent of a child or children with autism, don’t delay! Early and intensive intervention with ABA is key. View a free preview, learn about our access options, and become a DBI family.

Maura Buckley, former Product Manager
UDiscovering

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