Seeing the World from a Different Angle: A Travel Resource Guide for Parents

Travel Resource Guide cover

This article was contributed by Danielle Wright and Nicole Johnson, who both recently graduated from the University of North Carolina at Greensboro with master’s degrees in Speech-Language Pathology and have accepted jobs in public schools. They created a travel resource guide for families affected by autism and have generously shared it with us. To read and download the guide, click here.

We bonded in the first few stressful weeks of graduate school and learned that although we come from different worlds – Southern California and small-town North Carolina – we actually had a lot in common. We share a passion for making a difference in the lives of children and our interest in children with autism.

DisneyFor the past year, we’ve been creating this resource to complete the requirements for our capstone project. Around the time we needed to set a topic for the project, we found ourselves sitting at Caribou Coffee talking about Disney, a typical conversational topic considering Nicole worked at Disneyland during undergrad. She was expressing her concerns that so many people, including those with Autism Spectrum Disorder (ASD), were not aware of the resources available to them at places like Disneyland. We quickly realized that raising this awareness was a good starting point for our project. From there, we decided to make a resource guide full of tips for parents of children with ASD. Our original plan was to focus on theme parks, but our supervising professor encouraged us to expand to other types of travel.

Even though we have never personally tried to travel with a child with ASD, we understand that it can be a daunting task. For children with ASD, everyday tasks can be challenging. Changing a routine and trying something new can be completely overwhelming for the child and the family. What we want people to realize is that this doesn’t mean that traveling or vacations should be impossible. This resource is intended to make this process easier. As we researched travel tips, we saw that a significant amount of information is already available online, but no one place compiles all of this information. In creating the resource guide, we combined ideas from parents and professionals with firsthand experience, the information and knowledge that we have acquired over the years through our studies of ASD, and current research from journal articles to support several kinds of tips and resources. With this wide variety of sources, we hope that this resource will be helpful to the greatest amount of people for their specific needs.

The resource guide contains five main sections:

  • airports and flights
  • water safety
  • road trips
  • theme parks
  • camping

Each section outlines a number of tips and ideas, resources, and a social story that can be personalized. Many of the tips revolve around gradually exposing children to things that they will see and experience while traveling. Others include tips such as reminders of essential items to bring and how to educate the child about safety concerns. Flight rehearsal programs, swim lessons specifically for children with special needs, and camps for families of children with autism are examples of resources discussed in the guide. Also included are copies of a card families can give to people that explains a little bit about ASD and why they may be seeing certain behaviors.

We’re so excited that our project has this opportunity to be used by people who will actually benefit from the information. We hope that our resource will help you and your family see the world from a different angle.

Autism Moms: We Just Do It!

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This article was contributed by Katie Holler, an ASNC Autism Resource Specialist in the Eastern Region.

I am the mother of five daughters ages 7 to 13. Four of them have Autism Spectrum Disorder. When people ask me “How do you do it?,” I usually respond: “I just do it!”

You might recognize my slogan, borrowed from NIKE Inc., the athletic gear company. NIKE introduced “JUST DO IT” in 1988, and it was quickly seen everywhere: shirts, outdoor billboards, print media, and even graffiti art. “JUST DO IT” was meant as a motivational slogan for athletes and non-athletes alike, and it is definitely an empowering phrase.

Yet, the response “I just do it” might lead a person to believe that I am “winging it” or “flying by the seat of my pants.” Nothing could be further from the truth. Each of my daughters has different challenges, preferences, etc. I have found that my life requires an extensive amount of planning, with multiple contingency plans for “what-if” scenarios. Sometimes a quick response or exit strategy is needed for certain situations in our day. I focus on being proactive in preventing and solving problems as well as remaining consistent and structured with most of our day. However, some days, no amount of planning or preparation can prepare me for what the day’s events will hold.

As I was thinking about how to explain my attitude and efforts as a parent of multiple children on the autism spectrum, I thought about the core attributes I try to embrace. I attempt to focus on having patience, being forgiving, and embracing a sense of humor. It doesn’t come easy for me to keep my focus on these attributes. Some days, I find I am successful at incorporating all three, but other days, I struggle to incorporate one. Like every parent, I try my best.

It has often been said, “Patience is a virtue.” Patience is something we all wish to have, yet to acquire it, we need to have experiences that allow us to develop it. I think that I need to have patience not just for others, but for myself as well. What mother in the world has not ever had a regret or second thought about a parenting decision? I think it’s safe to say we all experience that. We may have this idea that we have to respond with perfection to every challenge, every obstacle. The reality is that our humanness does not equate with perfection. We just do the best we can with the knowledge we have. We must be patient with ourselves, and we must strive to be patient with others. Sometimes that can be a challenge. Life is frustrating, and situations can be frustrating. Not acknowledging that would be unrealistic. When we choose to be patient with others, we have the opportunity to turn a situation around for the better. Patience is truly a form of kindness. Being patient with ourselves and others will strengthen relationships and help us maintain a positive attitude.

Forgiveness is something we may struggle with, whether it is forgiving ourselves or others. It is difficult not to emotionally respond to a situation or person we feel has hurt us. We may replay in our minds something we ourselves or someone else did. We can become focused on it, and it can perpetuate feelings of negativity and bring us greater frustration. I have struggled with this myself. I have had individuals make hurtful comments to me or offer their unsolicited and insensitive advice about my daughters and their autism. These situations are hurtful. The reality is that if I do not choose to forgive the individual and their actions, I will carry the pain with me, and it will affect me and those around me. Forgiveness can happen inwardly. In other words, forgiveness of actions or comments does not have to occur via external interaction with the involved person. Many times, I have not ever received an “I am sorry.” I have made up my mind to “chalk up” the actions or comments of an individual as a lack of their understanding, experience, and sensitivity. These are things that I have no control over. I do, however, have control over whether I allow those words or actions to affect me. My analysis is, I have so much more I need to put my energy into that I do not have the time to think about this and try to fix it. I will say to myself, “I forgive them.” And then I keep moving.

A sense of humor is an essential ingredient to a happy and peaceful life. Some days lend themselves to humor more than others. Some days, discouragement and tears rule my world. When one of those days descends with its clouds and rain, I try to remember that it is just one day and that tomorrow is on its way. Fostering opportunities to laugh will help you to enjoy your life more. I have found watching comedies to help increase my “laugh factor.” I also try to be around people who are positive and have a good sense of humor. I have also found that my children provide great comic relief in their own way. Cultivating an environment of laughter is important, because it has the potential to reduce stress. My girls enjoy watching “America’s Home Videos,” so every Sunday at 7 p.m., our home erupts with loud laughter. Find opportunities to use and grow your sense of humor. Laughter is your best ally!

Life for all of us autism parents is busy and full of challenges. We all deserve recognition for the hard work and selfless love we show to our children. I think the reality is that “WE ALL JUST DO IT,” and we do it the best way we know how.

Katie Holler can be reached at 252-756-1316 or kholler@autismsociety-nc.org.

Read more

For more mothers’ perspectives on autism parenting, please check out Parenting Across the Autism Spectrum, available in the ASNC Bookstore:

As two experienced mothers of children, now adults, with autism, Maureen Morrell and Ann Palmer have taken some time to reflect on their experiences. Though their sons are on opposite ends of the autism spectrum, they have found that the lessons they have learned over the years are remarkably similar and apply to all parents. Each chapter presents general points on the topic in question, which are then richly illustrated by the authors’ own personal perspectives and recollections. The authors discuss the journey of parenting from the initial diagnosis to beginning to let go of their adult children. The authors offer consolation and understanding by revealing their own feelings throughout the journey, coupled with practical advice and a possible glimpse into the future, which is often far more bright than new parents may suspect.

Bringing Autism and Faith Communities Together

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This article was contributed by Judy Clute, an ASNC Autism Resource Specialist in Raleigh and mom to a son with autism.

During recent Easter celebrations, my thoughts turned to the many families who would not be participating in a worship service because they have a child with autism. Many families have told me that they tried to attend worship but it was just too difficult, or that they haven’t found a place of worship where their child is truly accepted. I felt the same way for years. The truth is that most families with children with autism cannot make it to the door of a worship service, so faith leaders don’t see the need.

For families who have a child with autism, participating in a faith community is a struggle. Often children with Autism Spectrum Disorder (ASD) find the environment overwhelming. Factors such as large crowds of people, bright lights, strange sounds, loud music, smells, and unfamiliar rituals are just too much. They may have difficulty sitting for long periods of time, and having to listen to a speaker when language is not understood can be exasperating. And to add to that, the stares or curious glances by those who do not understand their behavior are just too much to bear.

Parents of children with ASD are already exhausted from feeling unwelcome in many places in the community. Children with autism have difficulty making friends and often are socially awkward. For some parents whose children are severely affected by autism, even basic, daily care is stressful. Many families are also struggling with the financial burden of taking their child to several therapies. So, one of the first places families might go for support and understanding is their faith community, but unfortunately, this isn’t always what they find.

I believe that faith communities really want to help and want to be accepting, but leaders and members often just do not know how or where to begin. So, how can we bridge the gap? Here are some practical ways for your family and a faith community to come together:

To parents

  • You play a very important role. If you want your child to be served well, you need to tell anyone who works with your child about him or her.
  • Introduce your family and child to faith-based community leaders. I know it can be difficult and exhausting to have to explain your child to yet another person. But it is so important.
  • Discuss your child’s individual needs. What does your child need to have modified or what accommodation needs to be put in place for your child to succeed? Which positive reinforcements work for your child at home? What motivates your child?
  • Prepare your child. However your child communicates, whether it is verbally or with a picture exchange or written schedule, let your child know what is coming. Our kids do not like surprises. Bring your child to your faith community outside of a service, when very few people are present. Let your child walk around, touch, smell, and experience the environment. Introduce your child to the staff members who will be working with your child. Write a schedule of what the morning might look like on a Sunday in class.
  • Always think about what works best for your child. Maybe spending the entire time in a worship service is too much. Perhaps a slow introduction into service or a classroom would work best instead of expecting them to stay the entire time. Do not feel guilty about the decisions you make about what is best for your family.

For the faith community

  • Be welcoming and supportive. Have an attitude of openness and a desire to be supportive.
  • Assure parents that you want to provide them with a positive experience. Ask them what their goals are. Are they hoping their child will be included with typical peers? Do they need supports or accommodations? Are they looking for a separate class to meet their child’s needs?
  • Ask about the child’s interests, likes, dislikes, gifts, and talents. Does their child have any special talents or gifts that they would like to share? You can get the information you need with a questionnaire and/or an open conversation.
  • Don’t judge; understand that challenges may keep the family from being as involved as they would like.
  • Remember, families who have a child with autism have the same needs as other families: a need to belong, a need to be accepted, a need to be supported, and the desire to live out their faith.

Faith communities have a desire to grow, and subsequently they need to reach out to all people with love and acceptance, including families affected by autism. Finding a supportive and inclusive faith community can empower these families to grow in their faith walk. The faith community also grows when they welcome all families to be involved. It teaches those in the faith community about compassion and understanding of individual differences and challenges. Everyone benefits.

Read more on this topic

Shop online for books on autism and the faith community at our bookstore www.autismbookstore.com. Some we especially recommend:

Autism and Your Church: Nurturing the Spiritual Growth of People with Autism Spectrum Disorder, by Barbara J Newman

Leading a Special Needs Ministry, by Amy Fenton Lee

The Ignored, Overlooked and Often Forgotten Souls, by Dr. Marion Landua-Figueroa

 

Judy Clute can be reached at jclute@autismsociety-nc.org.

13 Tough Truths Only Parents of Kids With Autism Will Understand

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Editor’s Note – The following article is re-posted with permission by Eric Williams, a Fayetteville dad, counselor,and therapist.  For more information about Mr. Williams click here

This is what it’s like (and what it takes) to be the father of a child with autism. Buckle up!

Autism is not a childhood diagnosis; it is a lifetime diagnosis. And it’s not a diagnosis that affects one person. It affects the entire family and beyond.

I know this because I am a father of 7-year-old identical twin boys on the spectrum. I don’t profess to be an expert on autism, but I am an expert on my boys.

As fathers, we are an essential component of this autism phenomenon, and our parenting experience is unique. Here are 13 observations (and some advice) that dads of kids with autism will understand and everyone needs to know.

1. We have a different definition of “awareness” …
To the world, World Autism Awareness and Acceptance Day is April 2, and April is National Autism Awareness Month. To us, however, every day is autism awareness day. We’ll always be aware of the diagnosis and always work to make others aware and help them understand the disorder.

2. … and of “self-sufficiency.”
The goal of self-sufficiency does not change because of an autism diagnosis, only how we measure and teach it. We understand that each child will be limited in some capacity; however, potty-training, self-feeding, self-dressing, etc. are examples of self-sufficiency goals. Further down the road, we hope to help our children find jobs and live relatively independently.

3. We’re more powerful than the Man of Steel.
Superman wore one “S” on his chest, making him only half the man we are. As a Dad to a child with autism, we proudly wear “Super” and “Selflessness” on our chest.

Our powers include super hearing capabilities (hearing the television over verbal stims), super eyesight (distinguishing the difference among chocolate, a raisin or poop on the carpet), and the ability to predict the future (leaving the snack pantry unlocked and the path of destruction that will ensue.)

4. We’re very flexible (but not in a yoga sort of way).
Inconsistency is the only thing that’s consistent. No matter how much we plan ahead and schedule our days, weeks and months, autism does not work on a schedule (or any schedule, for that matter.) Even the most Type-A of us have learned to allow for some flexibility in our lives.

5. We’re anxious about the future.
Anxiety isn’t always a bad thing. In fact, the right dose of anxiety is just what we parents of kids with autism need to help us inspire and encourage our child’s independence. Telling ourselves that we won’t always be around for our child (while completely nerve-rattling), actually pushes us to invest in teaching them to care for themselves instead of enabling them to always rely on us.

However, too much anxiety about our child, unfortunately, can strain personal and professional relationships. We know to not take on too many responsibilities alone, and we’re not afraid to ask for help.

6. Sometimes, we’re sad. Really sad.
Unfortunately, at times, we experience some form of depression. Accepting our child’s limitations and the strain that places on our relationship with child’s mother as well as the effects of caring for a high-needs child can have on our job is simply overwhelming.

Additionally, finding the money for treatments and things such as insurance coverage for ABA therapy and developing an caregiving system for school holidays and summer vacation are just as challenging and emotionally draining.

7. We know the importance of teamwork.
We understand besides us, our spouse/wife/girlfriend/significant other is the most important person in our child’s life. Autism can be life-draining at times for either or both of you — but luckily not always at the same time. We know how important it is to support our mate being outside of his/her role of caregiver (think: night out with friends or date night for you two) as well as in the role of caregiver by sharing child-care and household chores.

8. We built this village and we love it.
The African proverb “It takes a village to raise a child” is especially true with autism. Your village is most likely some combination of medical providers, mental health providers, education system, church, friends and family. We’re essential to building this dream team for our child.

9. We’re more than “the guy whose kid has autism.”
Autism is only a slice of who we are. We’re still a man, spouse, friend, sibling, son, co-worker, neighbor, etc. We still enjoy the things we did before the diagnosis came, and we really want others to understand this. But because autism affects our life, we have to get creative when it comes to integrating all our interests. Many local autism chapters host events like barbecues, 5K runs and family fun days activities that are open to the public. Don’t be surprised if we invite you to attend.

10. We take care of ourselves.
We don’t get to skip doctor visits because we don’t have time or don’t feel like going. Our child and spouse are relying on us to help with the goal of self-sufficiency. And for some children with autism, those goals may never be reached.

11. We have the patience of Job.
We’re unfazed by our child saying and doing the same things over and over again. (Trust me, if autism was easy, it wouldn’t be a diagnosis.) But instead of becoming frustrated, we see these situations as opportunities for our child to practice being self-sufficient and for us to practice mentoring, coaching and teaching.

12. We’re the “good humor” man.
Everyone needs a sense of humor, but as a father of a child with autism, we need it for two very specific reasons: A sense of humor helps us manage the challenging moments of autism, and it can be contagious. Our children with autism can tell when Daddy is unhappy and stressed, and it affects their temperament and behaviors. In fact, our humor influences their humor.

13. We are an expert among experts.
Our expertise of our own children far outweighs the expertise of others. They need our input, and we know that. So we tirelessly stand up for our kids in treatment, in evaluations and in life. Doctors, therapists and schools can be replaced. We cannot.

Focus on Science at ASNC Annual Conference

Dr. Geri Dawson at the ASNC annual conference

Dr. Geri Dawson at the ASNC annual conference

Dr. Geri Dawson, Director of the Duke Center for Autism and Brain Development, opened the second day of our annual conference with a fact-filled presentation titled: “Autism Spectrum Disorders: What do we know? Where are we heading?”

We would like to thank her for sharing her time and knowledge with us. For those who were not able to attend her presentation, we are sharing some of the highlights here, including exciting news about effective behavioral interventions and current clinical trials for medical treatments.

Dr. Dawson started by talking about the prevalence rate of Autism Spectrum Disorder, which the CDC has reported as 1 in 68 among 8-year-old schoolchildren nationally, and 1 in 58 in North Carolina. The rising prevalence rate is also reflected in the number of clinical visits and unique patients they see at Duke, she said.

Who are these individuals with ASD?

Changes in the most recent Diagnostic and Statistical Manual of Mental Disorders, DSM-5, mean that Autism Spectrum Disorder (ASD) is not differentiated into subtypes such as Asperger’s Syndrome. ASD is diagnosed when an individual has problems with social communication and repetitive behaviors. Language delay is now categorized as a comorbidity, meaning it often is found in those with ASD, but not always, Dr. Dawson said.

Asperger’s and PPD-NOS have similar symptoms, causes, and treatments, so they are not separated out. But that does not mean that individuals cannot continue to claim these descriptors, just that doctors will not diagnose that way, Dr. Dawson said. The neurodiversity movement is “powerful and positive,” she said, adding that the Duke center supports it.

Other conditions that tend to co-occur in individuals with ASD include gastrointestinal problems, sleep difficulties, seizures, tantrums, self-injury, and aggression. Doctors are learning that by treating physical issues, such as GI problems, they can have a tremendous impact on behavioral issues, Dr. Dawson said. The challenge, though, is that individuals with ASD are not “good reporters” on health conditions.

Recent research highlights the talents and strengths of people with ASD, Dr. Dawson said, including one study that found that more than 60 percent had at least one exceptional skill in areas such as memory, visuospatial, reading, drawing, music, and computation. She said that we should be focusing on these skills to help with the employment problem among individuals with ASD. Less than one-fifth of high-functioning adults with ASD are able to find employment after high school, she reported. This high rate of unemployment cannot be blamed on their ASD, she said; often anxiety and depression are the causes.

In addition to unemployment, another sobering statistic she mentioned is the mortality rate among individuals with autism, which she said was six times higher than the general population’s. Risk factors include a tendency toward wandering, unsafe behaviors, side effects of medicines they might be using, seizures, and heart disease, which might be attributed to medicines and a lack of exercise.

What do we know about the causes and risk factors for ASD?

Autism Spectrum Disorder comes in many forms with many causes, many of which are still unknown. Breaking down the subtypes will help us to find treatments, Dr. Dawson said.

Fifteen to 20 percent of cases can be traced to genetic causes including Fragile X Syndrome, neurofibromatosis, tuberous sclerosis, and certain risk genes. Once risk genes are identified, scientists can create “mouse models” of the mutation and identify the biochemical pathway that is affected. This can lead to testing of medications for individuals with ASD. For more information about autism and genetics, Dr. Dawson recommended the website http://sfari.org/.

But ASD cannot be blamed on genetic risk factors alone – a complex interaction among genetic and environmental factors contributes to the risk. Some factors are protective, meaning they make it less likely that an individual will have ASD; two such factors are being female or folic acid being taken before or during the pregnancy.

Other factors increase the risk of ASD developing: advanced parental age, premature birth, or inflammation during a pregnancy, which can affect fetal brain development. Such inflammation could be caused by maternal infection, maternal antibodies, pesticides, or traffic pollution.

ASD disrupts long-range connections between brain regions, Dr. Dawson said. This causes problems with social interaction, which is a complex behavior that requires you to do several things at once. But at the same time, it might also explain the high level of skill in one specific area.

Promising directions in behavioral treatments for ASD

Multiple studies of infants at risk for autism have made it possible to detect ASD and begin early intervention for such children even before they are a year old. Scientists studied siblings of children diagnosed with ASD from the time of their birth, recording their characteristics in great detail. Eventually, one-fifth of those infants were also diagnosed with autism. The researchers were then able to backtrack and find symptoms of autism emerging when the children were 6 months to 1 year old. These included more interest in toys than people, less babbling than their typical peers, failure to orient to their names, reduced social smiling, and fewer consonant vowel syllables. By 12 months, the children exhibited impaired joint attention, delayed gesture, delayed language, and poor social imitation.

The exciting part of early detection is that it enables early intervention, Dr. Dawson said. With naturalistic developmental behavioral interventions, the intervention is incorporated into the child’s everyday life with their loved ones. Researchers have found that children learn about their world through active exploration and that emotional engagement keeps their attention and encourages retention. Language development is built upon joint attention, so this is also a crucial skill.

Some of the naturalistic developmental behavioral interventions that Dr. Dawson listed included Pivotal Response Treatment, created by Drs. Lynn and Bob Koegel, also conference speakers; JASPER; SCERTS; and Early Start Denver Model, which she co-created. A book she co-authored, An Early Start for Your Child with Autism, includes everyday activities and strategies parents can use for capturing attention, social engagement, nonverbal communication, imitation, joint attention and play, and language.

“Learning occurs every moment,” Dr. Dawson said. “These strategies can be used throughout the day.”

In one study conducted by Sally Rogers at UC Davis in which therapy was delivered by parents, the children had few symptoms of ASD by age 3.

Early behavioral intervention is successful because it is actually changing the course of brain development, Dr. Dawson said. Studies show that it improves IQ, language, and social behavior. Many individuals do still struggle with language and learning, so medical treatments are needed in combination to reduce the disability associated with autism.

The future: medical treatments

Currently, only two medications are FDA-approved for autism, and they address associated conditions. They are Risperdal for those ages 5-16, and Abilify, for those ages 6-17. There is hope that in the next few years, some of the clinical trials going on now will translate genetic findings into drug targets, Dr. Dawson said.

A current study at Duke seeks to determine whether infusions of umbilical cord blood – either that of the children themselves, or someone else’s – can reduce core ASD symptoms. Researchers hypothesize that the treatments might reduce neuroinflammation and are assessing behavioral and brain outcomes over one year.

Another multi-site clinical trial that Dr. Dawson mentioned involves the hormone oxytocin, which regulates emotional and social behavior. Research funded by the NIH is assessing oxytocin’s effect on social communication in 3- to 17-year-olds. The UNC-CH ASPIRE research program is conducting one of the studies; for more information, click here.

For more information about Dr. Geri Dawson and the Duke Center for Autism and Brain Development, visit its website at www.autismcenter.duke.edu. Individuals and families can join the Duke Registry for Autism Research to receive information about events and activities, information about studies for which they might qualify, and free diagnostic evaluations and referral information.

Focus on Employment at ASNC Annual Conference

Gregg Ireland, Larry Kraemer, Dawn Allen, and Van Hatchell

Gregg Ireland, Larry Kraemer, Dawn Allen, and Van Hatchell at the ASNC annual conference.

At ASNC, we believe that meaningful employment is a key component of a fulfilling life, but about four out of five adults with Autism Spectrum Disorder (ASD) are unemployed. Across the US, some enterprising families, and other concerned people, have come up with new and exciting ways to ensure that individuals with autism will enjoy the benefits of employment. One dad is right here in NC: Gregg Ireland and his wife, Lori, founded Extraordinary Ventures in Chapel Hill, a 501c3 enterprise that operates a portfolio of small businesses and employs 40 adults with developmental disabilities.

Mr. Ireland led an interesting and informative panel discussion titled “Employing Adults with Autism: Creating Successful Small-Business Ventures” during Saturday’s concurrent workshops at our annual conference.

Members of the panel were:

  • Larry Kraemer, the Human Resource Manager at the Walgreens distribution center in Anderson, SC, which was designed and built with a plan to fill at least 30 percent of its positions with disabled workers. Eight years later, 270 of its 650 workers have a disability and it has served as a model for almost 20 Walgreens centers around the country as well as other companies. (For a video on the center, click here.)
  • Dawn Allen, CEO of GHA Autism Supports, which supports more than 80 individuals in programs that provide residential, vocational, educational, community, and in-home services. GHA employs adults with autism in Albemarle, NC, on a farm and in a coffee shop that also contains a gift shop for individuals’ hand wares.
  • Van Hatchell, Managing Director of Extraordinary Ventures, which creates its businesses around the skills and interests of its workers, serving the full autism spectrum. Some of Extraordinary Ventures’ current businesses are office solutions, laundry, gifts, bus detailing, and event space rentals.

Here we share some highlights of their conversation:

Tell us about the importance of having a vocation. Why bother?

“We see so many individuals who have been told they can’t work,” Ms. Allen said. Meaningful employment can give them confidence and a feeling of self-worth, she said.

She shared that one individual with ASD had told her that his advice for parents was “Don’t stop your child from growing.” It is natural for parents to want to protect their children from hurt and failure, Ms. Allen said, but individuals with ASD are lifelong learners and deserve a chance.

What are some of the best qualities of these workers?

Workers with ASD have been shown to be safer as they follow rules and procedures more closely, Mr. Kraemer said. Turnover is also substantially less among such workers.

Employees with autism tend to be on time and consistently present for work, Ms. Allen said.

Mr. Hatchell, who shared that he had no background in working with people with disabilities before joining Extraordinary Ventures about three years ago, said he – and often their family members – had been amazed at the growth and progress in what they could accomplish.

What are some of the challenges?

Mr. Kraemer said that managers might find working with those with disabilities challenging as they must “manage in the gray.” Each employee must be managed individually, rather than through general policies and procedures, because of individual needs and skills.

Some employees might have behaviors that mean they cannot work in certain areas or at certain times, said Ms. Allen. For example, employees who speak very loudly might disturb customers in a quiet café, and employees who are sensitive to noise might need to work at night when fewer customers are around.

Mr. Hatchell brought a laugh from the audience when he shared his thoughts: “When we hire an individual, we typically are hiring about five people.” He said that very often, they must deal with family members, a job coach, a case manager, etc., all of them with their own expectations about the job. He also has found that families might not treat the employment as a “real job,” thinking it is fine to schedule long periods away.

What are the most important things to remember when setting up a successful work environment?

Ms. Allen advised learning about the individual’s needs and preferences; if the individual does not like to be outside, GHA does not try to place them at its farm. She also said that a key to success is a good match with the job coach.

Lessons from Extraordinary Ventures

How to create a business:

  1. Just get started, don’t let yourself spend a long time in decisions.
  2. Look at employees’ skills and interests to find a task they can do that will become a business.
  3. Accept that you will experience trial and error, and learn from it.
  4. Choose a business that does not require a big investment. “Fail quickly, cheaply, and often,” Mr. Hatchell said.
  5. Focus on local markets and those that do not already have too much competitors.
  6. Treat it as a real business, not just a vocational program. You must provide a service or product for which there is a need or desire.
  7. Compete on quality, not low price.
  8. Well-supported employees outperform expectations of their family.

How to find the right fit for an employee with ASD:

  1. Keep the sit-down interview short.
  2. Walk the prospective employee through the business, noticing their interest or dislikes.
  3. Let them try tasks.
  4. Look at their skills, challenges, and where they are happy.
  5. Provide a 30-day trial in their new post.

We appreciate all of the panel members sharing their time and expertise with our conference attendees!

Legislation to Authorize ABLE Act Introduced in NC

ABLE Act

This article was contributed by Jennifer Mahan, ASNC Director of Advocacy and Public Policy.

The North Carolina General Assembly has introduced legislation to authorize 529 savings plans for individuals with disabilities, as allowed under the congressional ABLE Act of 2014. Advocacy groups, including the Autism Society of North Carolina, are supporting the passage of legislation, which also has broad support across the North Carolina General Assembly. Senators Tom Apodaca, Tamara Barringer, and Ralph Hise are the primary sponsors of Senate Bill 367.

The federal ABLE Act, Achieving a Better Life Experience, allows states to set up savings programs that are similar to 529 college savings but specifically for people with significant disabilities. ABLE savings plans would allow people with disabilities, their families, or friends to save money for future needs such as support, housing, services, health care and personal care, without jeopardizing eligibility for other needed benefit programs. People of any age who acquired their disability before the age of 26 are potentially eligible. SSI and SSDI recipients would be eligible automatically; other people who have significant disabilities will have to meet a disability standard of proof established by Treasury regulations that will be written this year.

The basics

  • Eligibility: An eligible individual is a person (1) who is entitled to benefits on the basis of disability or blindness under the Supplemental Security Income (SSI) program or under the Social Security disability, retirement, and survivors program OR (2) who submits certification that meets the criteria for a disability certification (to be further defined in regulations).
  • An eligible individual’s disability must have occurred before the age 26.
  • An eligible individual may have one ABLE account, which must be established in the state in which he resides (or in a state that provides ABLE account services for his home state).
  • Contributors: Any person, such as a family member, friend, or the person with a disability, may contribute to an ABLE account for an eligible beneficiary.
  • Limits: An ABLE account may not receive annual contributions exceeding the annual gift-tax exemption ($14,000 in 2015). A state must also ensure that aggregate contributions to an ABLE account do not exceed the state-based limits for 529 accounts.
  • Qualified disability expenses are any expenses made for the benefit of the designated beneficiary and related to his/her disability, including: education, housing, transportation, employment training and support, assistive technology and personal support services, health, prevention and wellness, financial management and administrative services, legal fees, expenses for oversight and monitoring, funeral and burial expenses, and other expenses, which are approved by the Secretary of the Treasury under regulations.
  • Earnings on an ABLE account and distributions from the account for qualified disability expenses do not count as taxable income on federal tax returns.
  • Assets in an ABLE account and distributions from the account for qualified disability expenses would be disregarded when determining the designated beneficiary’s eligibility for most federal means-tested benefits.

Disability Scoop outlines the ABLE Act here, and the National Disability Institute has an informative, 10-minute video explanation as well.

Show your support

ACTION: While the ABLE Act Authorizing Bill has broad support in the NC General Assembly, we do encourage you to ask for your own legislators’ support.

  1. Check to see whether your NC General Assembly senator has sponsored or co-sponsored the bill. If they have sponsored the bill, be sure to THANK them for doing so and let them know you appreciate their support of the ABLE Act.
  2. If your senator is not a sponsor, ask them to vote for it. Talking points on the bill are below. The best thing you can do is tell them what it will mean to be able to set aside savings for future needs and how important it is to you personally.

Not sure who represents you in the General Assembly? Type in your address on the Senate and House maps to find your district and members. The first two maps are for the General Assembly; ignore the last map for this bill.

Talking points

  • ABLE lets individuals, families and friends to save for future needs for things such as housing, transportation, training, assistive technology, support services, health care, and other expenses to help people live.
  • It allows these savings for future needs without jeopardizing eligibility for most federal benefit programs.
  • Earnings on an ABLE account and distributions from the account for qualified disability expenses do not count as taxable income on federal tax returns.
  • ABLE accounts promotes self-determination, financial responsibility, and thoughtful planning for the future.

Have questions about this legislation or other public policy issues? Contact Jennifer Mahan, ASNC Director of Advocacy and Public Policy, at jmahan@autismsociety-nc.org or 919-865-5068.

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