Genome Testing for Siblings of Individuals May Aid in a Diagnosis Before Symptoms Appear

One of the key priorities of interventions for autism spectrum disorder (ASD) is starting early, with some evidence showing infants as young as seven months old could benefit. Yet, most children in North America aren’t diagnosed with ASD until they’re over four years of age. New research led by The Hospital for Sick Children (SickKids) and the University of Alberta published on December 5, 2019 in Nature Communications has found testing the DNA of siblings of individuals with ASD may be predictive of a future diagnosis even if symptoms aren’t yet apparent.

ASD refers to a group of neurodevelopmental conditions resulting in challenges related to communication, social understanding and behaviour. Studies show families who have a child with ASD have a 6.9 to 19.5 per cent chance of another child having ASD and a 30 to 40 per cent chance of another child having atypical development.

Dna test infographic. Genome sequence map, chromosome architecture and genetic sequencing chart abstract data vector illustration

Genomic Factors Linked to ASD-Related Traits

According to Dr. Stephen Scherer, Senior Scientist and Director of the Centre for Applied Genomics (TCAG) at SickKids, Director of the McLaughlin Centre at the University of Toronto and principal investigator of the study: “Genetic factors are the most likely reason we see a clustering of ASD related traits in families. We wanted to investigate the possible benefits of genetic testing for infants whose older sibling had already been diagnosed with ASD. If we can identify those children early, we may be able to enroll them earlier in therapies.”

The researchers looked for the presence of genetic alterations that have been linked to ASD called copy number variations (CNVs) in over 288 infant siblings from 253 families. By age 3, 157 siblings were either diagnosed with ASD or developing atypically. DNA testing revealed CNVs in genes relevant to ASD in 11 (7 per cent) of the 157 siblings who were eventually diagnosed.

The study found that the presence of an ASD-relevant CNV in a sibling had a high likelihood of predicting a future diagnosis of ASD or atypical development. This marks the first time that scientists have been able to quantify the predictive value of CNVs in determining these diagnoses.

Early Identification Could Lead to Earlier Intervention

“These findings add to a growing body of evidence that biomarkers might be helpful in identifying pre-symptomatic infants who are likely to develop ASD or other developmental challenges,” says Dr. Lonnie Zwaigenbaum, Professor of Pediatrics, Stollery Children’s Hospital Foundation Chair in Autism and Stollery Science Lab Distinguished Researcher at the University of Alberta.

“At this point, we can’t fully determine the anticipated severity of a child’s future symptoms. What we can say is that it’s important to closely monitor their development and start therapeutic interventions early to support their skill development and address emerging functional impairments related to ASD.”

The research team has confirmed similar findings in a separate group of 2,110 families having one child with, and a second child without ASD. Their next step will be to look beyond CNVs and determine how newer technologies – like whole genome sequencing – might increase the early genetic detection rate.

YOU CAN DOWNLOAD THE ENTIRE STUDY HERE: https://www.nature.com/articles/s41467-019-13380-2

The families who participated in the primary study are from the Baby Sibling Research Consortium (BSRC). Additional families that participated in replication testing are from the Simons Simplex Collection. This work was supported by Autism Speaks, Autism Speaks Canada, the Simons Foundation Autism Research Initiative, National Institutes of Health (NIH), National Institute of Mental Health (NIMH), Canadian Institutes of Health Research (CIHR), Canada Foundation for Innovation (CFI), Genome Canada, Ontario Genomics, Kids Brain Health Network, Canadian Institutes for Advanced Research (CIFAR), Stollery Children’s Hospital Foundation through the Women and Children’s Health Research Institute at the University of Alberta, Ontario Brain Institute, the Government of Ontario, the McLaughlin Centre at the University of Toronto, and SickKids Foundation.

About The Hospital for Sick Children (SickKids)

The Hospital for Sick Children (SickKids) is recognized as one of the world’s foremost paediatric health-care institutions and is Canada’s leading centre dedicated to advancing children’s health through the integration of patient care, research and education. Founded in 1875 and affiliated with the University of Toronto, SickKids is one of Canada’s most research-intensive hospitals and has generated discoveries that have helped children globally. Its mission is to provide the best in complex and specialized family-centred care; pioneer scientific and clinical advancements; share expertise; foster an academic environment that nurtures health-care professionals; and champion an accessible, comprehensive and sustainable child health system. SickKids is a founding member of Kids Health Alliance, a network of partners working to create a high quality, consistent and coordinated approach to paediatric health care that is centred around children, youth and their families. SickKids is proud of its vision for Healthier Children. A Better World.

About the University of Alberta Faculty of Medicine & Dentistry

The Faculty of Medicine & Dentistry at the University of Alberta is a leader in educating and training exceptional practitioners and researchers of the highest international standards. The faculty’s mission is to advance health through excellence in teaching, research and patient care. It is home to one of the top 100 ranked medical schools in the world. For more information, please visit www.ualberta.ca/medicine.

Media Contacts

Jessamine Luck
Communications Advisor
The Hospital for Sick Children (SickKids)
jessamine.luck@sickkids.ca
416-813-7654 ext. 201436

Ross Neitz
Communications Associate
University of Alberta
rneitz@ualberta.ca7
80-492-5986

This article is reprinted with permission. You may view the original article, published on December 5th, 2019, at https://autismsciencefoundation.org/news/genome-testing-for-siblings-of-individuals-may-aid-in-a-diagnosis-before-symptoms-appear/.

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Posted in Science and Research, Winter 2020 Issue | No Comments »

How to Navigate The Topic Of Driving with ASD

How you ever thought of your loved one with an autism spectrum disorder (ASD) having the ability to drive? Are you worried about how one can drive, despite being on the autism spectrum? I am writing as someone with ASD who has had their license for over a year, and I want to light a path for parents and individuals to consider. My state (CT) has typically avoided addressing the ASD-related driving inhibitions, despite various workshops and presentations I seen over the last five years addressing those with special needs. I do not blame them; Autism is complex. While there may not be many resources or places to turn to for these needs in your area, the span and outreach of knowledge is growing. At Planning Across The Spectrum, learning to drive has become an integral part in our coaching the transition process. The following topics include what I believe to be among the most important things for parents and individuals to consider when tackling the topic of driving.

Andrew Arboe

Andrew Arboe

Motivation

The first aspect to consider is the motivation of the individual who wants to drive. We all have a reason to drive. Some of these include employment, college, socialization, or just enjoyment. All of these revolve around the freedom to do something so important for ourselves and our own care. My personal motivation was a combination of employment, socialization, and just self-improvement. I wanted to stay in my work field, which is the autism community. Most jobs in the autism field require the need to travel a certain number of miles to do the job. During the time period I was working towards my driver’s license, I was also working towards my Associate Degree as a Disability Specialist. As I started closing in on the end of my college degree, I realized that I needed the driver’s license to keep improving myself as a person and navigate the professional world. It was that motivation and determination that helped set up the path to getting my license. I believe once an individual’s motivation is established, it can light up some possible paths to take to take up driving. There is no time frame on this; I got my license when I at 25 years old. If you want to do it, finding your motivation is key.

A Support Team

The second aspect I find important is to know your support team and make sure they are 100% on board. I speak at organizations in my state and constantly note recurring themes of power struggles between teens/young adults and their parents. There are so many cases where the parents support (or even force the issue) their teen/young adult or the individual interested in driving, but also struggle with the idea of giving and trusting their loved one with the responsibility.

In my case, my father was nervous about me driving because of my autism. He was worried that I would lose focus on the road and in traffic. The beginning was difficult because of that dynamic, and I learned to hate the words “pay attention” because of my mind associating it with the autism. My dad had a “just do it” attitude while I just needed more time to get used to it and more opportunities to learn, which is not something I was receiving. My saving grace was being hired for a position in the ASD community that was 45 minutes away from home once a week. My father would let me drive there and home and it was the perfect opportunity to build my skills. As the weeks went on, my dad became more comfortable about me driving and let me practice more and more.

My advice to the parents of those in a similar situation as mine is to follow the pace of the person who is learning. If you are their teacher, allow them to practice. Be patient. Allow them to make mistakes. Listen to what they are telling you and asking of you. Start slow and build up as skills improve. If you are the learner, ask for what you need. It will get better. You will get better. When my father finally commended me for how much I had improved, it was exactly what I needed to hear and really helped my motivation. All parties need to understand that anxiety is going to play a major role in this, and it is going to take time. There is no magic timeframe to learn here, no magic age. I was 25, my co-worker was 40. Take it slow. Listen to each other. Let it happen as everyone is ready.

Use Your Community

The third thing to focus on is to use your community. Look into driving schools or find friends in the community that can help. Don’t be afraid to ask for help. My father was my primary teacher, but I had friends and other individuals that helped throughout the process. Some helped with improving my parking skills, some helped take me out on the highway, some were better at explaining the laws, etc. Together using their individual strengths, I became a well-rounded driver. I find that it is a good idea to have different people helping the individual because it allows the opportunity of the individual to have different accounts on their progress. For driving schools, look at the reputation of local areas and ask if they ever had any experiencing teaching people with ASD how to drive. This doesn’t mean you have to disclose anything or even give your name—just ask questions. The driving school I attended was very supportive, and using them gave me access to tools I wouldn’t have at home (such as a vehicle that the teacher can also control if something goes wrong, helping alleviate my anxiety). As I discovered, there are many resources that are out there, but hidden away and one must find them. Do your research and ask questions.

Summary

Driving is a scary topic in the ASD world. I do have to say that choosing not to drive at all is a valid choice and there are always different transportation options. Choosing to drive or not will not determine your success or value. It is one of many options, and one that I believe can be attainable with the right tools, team, and community.

Andrew Arboe can be contacted by emailing arboea@planningacrossthespectrum.com. For more information, please visit www.planningacrossthespectrum.com.

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Posted in Adolescents, Winter 2020 Issue | No Comments »

Swiss Army Knives of Tech: How Mobile Technology Groups Benefit People with Intellectual and Developmental Disabilities

As time progresses, so does technology. Whether it’s opening a door or setting an alarm as a reminder, technology has become more available and accessible, especially to individuals with intellectual and other developmental disabilities (I/DD). Technological advances have created an opportunity to increase a person’s independence and enable him or her to accomplish their goals on their own.

Charles Umaña

Charles Umaña

A 2013 study proved that, with iPod use and instructions, adults with moderate intellectual disabilities could use an ATM with 100% accuracy, compared to 25% accuracy prior to the introduction of the iPod.1 Using self-modeling videos created with the iPad, adolescents with autism and intellectual disabilities were able to improve their problem solving skills.2 However, these findings show that access to technology does not always ensure an increase in task completion or independence. Having resources available, such as prompts, guides or modeling examples on how to use technology is just as important as having the tech itself. With proper planning, use in technology can aid with increased independence among people with I/DDs.3

To aid with efficient use of technology, AHRC New York City’s Day Habilitation without Walls in Staten Island started a technology group. The bi-weekly meeting is designed for individuals seeking guidance in the use of mobile technology, including tablets, smartphones and laptops. While the tech used is primarily based on devices provided by families, AHRC NYC has provided technology to those within the group to ensure maximum access to devices. The devices were purchased through a New York State Balanced Incentive Program grant awarded to AHRC NYC.

“Access to mobile technology is one challenge for people with I/DD, but the bigger issues are the lack of adequate support and training,” said Marco Damiani, CEO of AHRC NYC. “Just like anyone else, they want to connect with friends on Facebook and other social media. They enjoy the sense of community.”

Group members suggest topics, which are based on their goals, inspirations, and desires. As the group’s instructor, I research their suggestions to find appropriate software/hardware that would be most beneficial. Recommendations are based on a combination of experiences of people in other programs, and their support staff. Applications are also found by the Individualized Technology Strategies Department, whose focus is bringing efficient use of technology to the people AHRC NYC supports.

AHRC New York City

Lesson plans for the group are based on the information obtained and covered in future gatherings, held at a community library. Started in 2015, the group’s topics have included employment, art, health and wellness, traveling, budgeting, stress relief and recreation.

The members of the group have changed over time, as some members move on to employment. The current group consists of a mix of old and new members.

“I like learning about apps like Google Maps and budgeting, and Fudget,” said Andrew Neuschaefer, a group member since 2016. “(The group) has helped me to learn about which apps to download.” Andrew uses his iPhone in the group. He keeps track of buses and trains on his phone while commuting in the community during program hours.

Jaclyn Tirone joined the group in 2018. “I like it. It’s fun listening and talking about apps,” Jaclyn said. She primarily uses her iPhone, but also has an iPad at home. Jaclyn enjoys using photograph apps such as Prisma, and she’s improving her reading with applications like Newsela. “Newsela helps me look at news.”

Mobile tech devices have allowed for greater access to the world and the opportunity to become more independent. These devices have become the “Swiss army knife” of technology, with applications and software being readily available for matters of any kind. With proper guidance and support, like groups mentioned above, people of all abilities would have the potential to reduce their hurdles and challenges. Having access is important, but having groups for growth is the next step for bridging gaps to independence.

Charles Umaña is a Technology Deployment Specialist/Trainer for AHRC New York City with over 10 years of experience working with technology in collaboration with people with I/DD and their supporting staff.

Footnotes

  1. Scott R., Collins B., Knight V., & Kleinert, H (n.d.). “Teaching Adults with Moderate Intellectual Disability ATM Use via the iPod”
  2. Schaefer Whitby, P. J. (n.d.). “The Effects of Solve It! on the Mathematical Word Problem Solving Ability of Adolescents with Autism Spectrum Disorders”
  3. Hickson, L., & Khemka, I. (n.d.). “Independent Review of BIP Innovation Project Outcomes”
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Posted in Technology, Winter 2020 Issue | No Comments »

ASN Winter 2020 Issue

“Autism and Neurodiversity”

ASN Winter 2020 Issue

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Articles in This Issue

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First Responders Promote Awareness and Training Through the Autism Patch Challenge

A simple idea to bring autism awareness to the New Rochelle Police Department and the City of New Rochelle, NY, has since spread to over 350 first responder agencies around the United States, and continues to grow with each passing month.

On February 7, 2017, I made an appointment to meet with New Rochelle Police Commissioner Patrick J. Carroll (Retired) to discuss a community outreach project for autistic children in New Rochelle. With proto-type in hand, I remember vividly walking into his office to request permission to place a custom designed New Rochelle Police Autism Awareness Patch (magnet) on our patrol cars. The Commissioner loved the idea and granted permission to place the autism magnets on our emergency vehicles, along with patches of the same design on our uniforms during Autism Awareness Month. Once approved I challenged three near-by police agencies to do the same. Each agency accepted the challenge and then challenged three other agencies to follow along. As a result, the New Rochelle Police Autism Patch Challenge (or #AutismPatchChallenge) was born. The challenge has three simple goals:

Detective Terrance Fudge (left), Detective Christopher Greco (middle) Detective Frank Provenzale (right)

Detective Terrance Fudge (left), Detective Christopher Greco
(middle) Detective Frank Provenzale (right)

I started the challenge primarily to honor my non-verbal autistic son Christopher and to demonstrate to our community and to surrounding communities that first responders were aware of the concerns expressed by parents and other caregivers – that first responders lack the training to detect autistic behavior and lack the necessary skills to respond to calls for service involving autistic children. What started as a simple gesture to honor my son quickly turned into a nationwide campaign.

Agencies from all of the country are now actively involved in autism awareness campaigns, training and fundraising. A small selection of participating agencies include the NYPD Counter Terrorism Unit, the Port Authority of New York and New Jersey Police Department, the Boston Housing Police Department, the Dallas Police Department, San Leandro Police Department (CA), Lea County Sheriff’s Department (NM), Cook County Sheriff’s Department (IL), Metropolitan Police (DC), FBI Philadelphia, West Liberty (IA), Pulaski County Sheriff’s Department (MO), Mountain Brook Police Department (AL) and the Jupiter Police Department (FL).

Every participating agency that creates an autism patch continues to spread autism awareness and training throughout their communities and throughout the country. Today, many agencies may not even realize where this endeavor started or why, but what is clear is that since 2017, over 350 agencies have been identified as creating their own autism awareness patch and that each participating agency has had a direct and positive impact within their own communities.

Sample of Autism Patches

Sample of Autism Patches

On April 18, 2019, 125 first responders from over 35 surrounding agencies in Westchester County (NY) received free training on autism detection and response (paid for by Christopher’s Voice). On November 13, 2019, 60 first responders from 20 different agencies throughout the Milwaukee Wisconsin area received similar training from Blue Line Spectrum LLC. In NJ, thanks to P.O.A.C. Autism Services over 65,000 first responders have been trained by Gary Weitzen since 1999.

In addition to training, local autism programs have benefited significantly and will likely continue to benefit in the months and years to come. A small sample of fundraisers from around the United States include the following – In Massachusetts, the Randolph Police Department recently raised $3,000 by selling autism patches and donated their proceeds to the May Institute for Autism. In Kent, NY, their police department raised $1,000 for the Anderson Center for Autism. In Mobile Alabama, their police officers sold patches and donated $1,235 to Woody’s Song School for autistic children. In Lea County New Mexico, their Deputy Sheriffs raised $4,500 and donated their proceeds to the Light it up Blue Foundation for Autism. In North Smithfield (RI), their officers raised money for The Autism Project; In Wilmington Delaware, their officers raised money for the Doug Flutie Jr. Foundation. In Seal Beach (CA), officers raised funds for their Special Education PTA and in NY/NJ; the Port Authority Police Department raised $5,600 and donated their proceeds to two local autism charities – Christopher’s Voice and P.O.A.C. Autism Services (Full disclosure – I am the co-founder of Christopher’s Voice).

These are just a few examples of what is happening in police departments, fire departments and EMS agencies from around the country. As I continue to network with officers from different states, I continue to recognize a common trend between the officers that take the lead within their agency. Most officers have a child with autism and each officer wants to honor their child in their community, just as I did.

The inspiration for the Autism Patch Challenge was my son Christopher. Christopher, who was diagnosed with autism at 11 months, has had a very challenging life – one that has been overwhelmed with medical issues. Since April 2018, Christopher has been hospitalized at Blythedale Children’s Hospital in Westchester County with epilepsy and dystonia. Losing his ability to walk, Christopher is now confined to a wheelchair or hospital bed. Prior to being hospitalized Christopher led a limited but happy life. He spent most of his days running joyfully around the house, swinging on his swing, jumping on the trampoline and eating to his heart’s content. Being non-verbal and possessing almost no life skills, Christopher relied on my wife (Tracy), his teachers, therapists and aids for almost everything – except making a mess. Prior to being hospitalized Christopher attended William Ward Elementary School in New Rochelle, where he received constant love, support and friendship. It was there, in April of 2017 (and each year since) that over 75 first responders from over 35 different agencies converged onto the school campus for the first ever multi-agency first responder autism awareness day in New Rochelle. Each responding agency came with their Autism Patch affixed to their emergency vehicles. Responding officers spent quality time with special education students and “regular” students. They distributed autism patches to all the children and completed demonstrations for them. It was a great opportunity for hundreds of children to “meet and greet” with local heroes.

Many of you may be wondering why I wrote this article and the answer is simple – I want the challenge to continue and I want you to encourage your local police and fire agencies to participate. The cost for them to participate is nominal and the return on investment is priceless. Your communities will be thankful, your first responders will be more aware and better trained and just maybe you might have one of these special moments – the ultimate story that demonstrates the success and impact of the New Rochelle Police Autism Patch Challenge.

This story hails from Berlin, Massachusetts. On April 2, 2019 Michael Gomez, a 13-year-old autistic teenager was on his bus going to school when the bus driver began experiencing chest pains and was no longer able to drive or call for help. Michael jumped into action and ran from the bus into his school. Michael pleaded for help and an ambulance responded. The driver was transported to a local hospital where he remained for several more days. Why is the story so special? Because on this day, April 2, 2019 it was World Autism Day and affixed to Michael’s shirt was the Berlin Police Department’s Autism Awareness Patch. “I felt like a first responder” Michael told reporters (during his press conference) and it was the autism patch that gave him “the courage to act.” Priceless!

To this day I remain grateful to the New Rochelle Police Department that continues to allow me to honor my son Christopher and children like him everywhere.

To learn more about the challenge and to read more great stories from around the country visit our Facebook page @ New Rochelle Police Autism Patch Challenge.

Christopher Greco is a Detective with the New Rochelle Police Department since 1996. He currently serves in the General Investigations Unit. Detective Greco is also the PBA President. In 2016 Detective Greco raised $15,000 and implemented the New Rochelle Police Project Lifesaver Program. Detective Greco is married to Tracy Camillone Greco and together they have two children, Christopher and Gabriella. Detective Greco and his wife Tracy are the founders of Christopher’s Voice – a charitable organization for autistic children.

For more information, you can email Detective Greco at Cgreco@newrochelleny.com.

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Posted in First Responders, Winter 2020 Issue | No Comments »

Authentic Strength-Based Practice: Can Neurotypical Professionals Make a Paradigm Shift?

When I talk about my work, it is not about understanding autism from a neurodiverse perspective. That is not for me to do. I am not autistic. I have learned immensely from my partnerships and interactions with autistic individuals. Autistic self-advocates should be leading the way, compensated as experts in educating the professional community about neurodiversity, autism and what interventions are most helpful and what research is needed. Instead, I would like to focus on how professionals can shift to a strength-based practice, embrace neurodiversity and recognize how a neurotypical bias may impact our ability to engage in authentic strength-based practices.

Kristie Patten Koenig, PhD, OT/L, FAOTA

Kristie Patten Koenig, PhD, OT/L, FAOTA

Professionals are able to identify deficits and maladaptive functioning, that is what we are trained to do in fields such as special education, occupational therapy, and speech and language therapy for example. We do identify strengths in our assessments and observations, often by default, but need to emphasize weaknesses in order to provide services. This emphasis has narrowed the scope of both practice and research to the deficiencies demonstrated by autistic individuals, and goals and treatment programs that then are centered around remediating areas of weakness. No one, however builds their lives on remediated weaknesses. We build our lives on things we do well, and our interests. Saleeby (2001), an early proponent of using strength-based models in the field of social work, identified that a problem orientation begins to look like an exercise to meet the needs of the professionals rather than those they serve. The chosen focus of intervention, whether it is through a strength-based lens or a deficit focus will be critical for long-term outcomes including quality of life, well-being and the ability to live a self-determined life. By holding a longer view of success and outcomes, a shift away from a primary focus on deficiencies is in order (Patten Koenig & Shore, 2018). Can professionals replace a deficit lens, with one in which challenges, especially those caused by the environment and social attitudes are addressed, but competence becomes the bias?

It is a radically different practice perspective from the problem-focused approach and there are neurotypical biases that make it difficult for professionals to make this shift. A strength-based practice has its roots in self-determination theory, including a) autonomy, being able to freely choose things in your life and not being controlled, b) competence, doing things you initiate and that make you stretch, and c) relatedness, choosing your relationships with others (Ryan & Deci, 2000). Practice begins to look different if these core psychological needs are held as primary. This can be illustrated by using restricted or focused interests as an example.

Professionals often discourage the use of interests in the classroom or during therapy, or hold them out as rewards. Controlling use of rewards is in direct opposition to the development of autonomy (Ryan & Deci, 2000). Patten Koenig & Williams (2017) surveyed 80 autistic adults as to how they characterized and utilized interests both as children and now as adults, and while 87% of the participants wished that teachers and professionals would have used their interests in the classroom, only 12% reported that their teachers actually did use their interests as strengths to support learning. These adults overwhelmingly reported that their interests were positive, helped calm them and mitigate stress, were not interfering or anxiety producing and should be utilized for learning and mastery, development and autonomy (Patten Koenig & Hough Williams, 2017), two core skills of self-determination. The neurotypical professional bias often sees these interests as part of the problem, versus a solution.

There is a neurotypical bias as to how professionals should address social skills. Approaches to social interventions for autism are framed by neurotypical definitions of being social. Heasman and Gillespie (2018) investigated how autistic individuals build social understanding and found that in a high-interest activity, there is a generous assumption of common ground, which can lead to rapid rapport. Instead of a social skills group to increase competence in discrete social skills, a strength-based practice could have the therapist utilize inclusive interest-based groups that students are autonomously motivated to participate in, have a competent knowledge base in order to make connections, and socially participate in a more meaningful, self-determined way. Teachers could incorporate strengths and interests into subject matter, routines and social relationships by simply respecting the inherent value they have for the individual versus pathologizing these interests. This builds relationships in a way that is meaningful to the student. The framing matters. If I view interests as positive and an avenue for learning and goal attainment, I must find a way to incorporate them into all aspects of professional practice. If I frame these interests as interfering, then I must eliminate them.

Autistic individuals are expressing anger and frustration at therapeutic interventions that diminish interests (Bagatell, 2010) and advocacy groups are making a distinction from interventions that provide supports and services to help individuals achieve personally valued goals versus “normalization” of their behavior (Parsloe, 2015). If practitioners can adopt a strength-based practice, their thinking will shift away from any intervention that attempts to “normalize,” unless it is personally valued (Patten Koenig, 2019). These shifts in thinking will require the professional to question him or herself regularly and ask questions such as: Am I focusing on weaknesses in the absence of strengths? Am I offering activities and choices that are related to interests? Am I viewing autistic interests as strengths versus motivators or worse yet suppressing them as maladaptive behaviors? Am I combining a strengths perspective with the challenges that are being addressed? The first place to find the answers to those questions is to examine our evaluations, goals, individual educational plans and interventions. If the answer is a one-line response for “strengths,” it is time to see the biased perspective and make the shift to an authentic strength-based practice.

Kristie Patten Koenig, PhD, OT/L, FAOTA, is Associate Professor and Chair at the New York University Steinhardt School of Culture, Education and Human Development Department of Occupational Therapy. If you would like to contact Dr. Patten Koenig, she can be reached via email at kpk3@nyu.edu.

References

Bagatell, N. (2010). From cure to community: Transforming notions of autism. Ethos, 38, 33-55.

Heasman, B. & Gillespie, A. (2018). Neurodivergent intersubjectivity: Distinctive features of how autistic people create shared understanding. Autism, 22, 1-12 https://doi.org/10.1177/1362361318785172

Parsloe, S.M.(2015). Discourses of disability, narratives of community: Reclaiming an autistic identity online. Journal of Applied Communication Research, 43, 336-356.

Patten Koenig, K. (2019). A strength-based frame of reference for autistic individuals. In P. Kramer, J. Hinojosa & T. Howe (Eds.)                . Frames of reference for pediatric occupational therapy (4th edition).

Patten Koenig, K. & Shore, S. (2018). Self-determination and a shift to a strengths-based model. In R. Watling & S. Spitzer (Eds.), Autism: A Comprehensive Occupational Therapy Approach, 4th edition, Bethesda, MD: AOTA Press.

Patten Koenig, K. & Hough, L. (2017). Characterization and utilization of preferred interests: A survey of adults on the autism spectrum. Occupational Therapy in Mental Health. https://doi.org/10.1080/0164212x.2016.1248877

Ryan, R. M. & Deci, E. L. (2000) Self-determination theory and the facilitation of intrinsic motivation, social development and well-being. American Psychologist, 55, 68-78.

Saleebey, D. (1996). The strengths perspective in social work practice: extensions and cautions. Social Work, 41(3), 296-306.

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Posted in Neurodiversity, Winter 2020 Issue | No Comments »

Navigating Neurodiverse Relationships: Disclosure and Self-Advocacy

If you are an adult who has had a longstanding diagnosis of ASD or a newly diagnosed individual, then you probably grapple with these ongoing decisions:

The reality is that diagnosis disclosure is a component of navigating neurodiverse relationships across domains of life: with family, friends, romantic partnerships, coworkers, supervisors, etc. Engaging in diagnostic disclosure is a step toward effective self-advocacy and increasing a shared understanding of your needs and unique ways of processing the world around you; however, it can also be intimidating and connected with emotions which means that being prepared with a framework of approach is useful.

Katherine Cody, PsyD

Katherine Cody, PsyD

WHY and WHEN to Disclose

WHY: Research indicates that first impressions of adults with ASD improve when diagnostic disclosure occurs (Sasson & Morrison, 2019). This finding suggests that neurodiverse relationships improve with provision of disclosure, and the potential to forge new relationships increases when disclosure happens. Disclosure provides opportunity for others to develop an increased understanding of strengths, challenges, needs, and processing differences. When disclosing, it is imperative to be very clear about the purpose of the disclosure – DEFINE A GOAL. Ask yourself what you are hoping to get out of disclosure. Is it to obtain understanding or support? Link what you disclose with this defined goal.

WHEN: There is no clear “right” time to disclose diagnosis. The tricky part about this is that there is no clear rule for which circumstance indicates which kind of disclosure, and self-awareness is needed to guide the disclosure process.

PROS & CONS of Disclosure

PROS:

CONS:

HOW to Disclose Diagnosis

Liane Holliday Willey (2004) explains that she “chose long ago to have fun with my Aspieness” (p. 181). Liane details several approaches to diagnostic disclosure including hosting a gathering that is an ASD-friendly atmosphere and incorporates sensory awareness; focusing on the facts and communicating the information with this emphasis; use of various forms of writing; or finding an identified ally to disclose the information on your behalf. The takeaway from Liane’s suggestions for disclosure is that use of self-awareness and insight regarding your needs, communication style, and knowledge of the other party with whom you are engaging in disclosure are all elements that determine how to go about disclosure. Again, there is no one size fits all, but there are a range of options that might work for reach person. Additionally, as Becca Lory indicates, “the ‘how’ changes based on the nature of the relationship; you wouldn’t disclose diagnosis the same way to a family member as you would to a coworker” (personal communication, December 6, 2018). This is challenging, because there is not a single defining rule or single route to take in terms of how to disclose diagnosis.

AFTER Disclosure – Now What?

As Becca Lory, an adult autistic self-advocate, reports, many Aspies engage in the disclosure process, but then lack understanding or awareness of what to do next. Becca recommends the following steps:

Ultimately, diagnostic disclosure is a significant component of navigating neurodiverse relationships and doing so has potential to result in benefits for all. Keeping these steps in mind as a starting point will assist with getting your needs met, improving relationships, and more accurately distributing information about ASD to the community at large.

Dr. Cody is a Professional Advisory Board Member for AANE. She can be found via her website www.spectrumpsychservices.com or via e-mail at drcody@spectrumpsychservices.com.

References

Frost, K. M., Bailey, K. M., & Ingersoll, B. R. (2019) “I Just Want Them to See Me As…Me”: Identity, Community, and Disclosure Practices Among College Students on the Autism Spectrum. Autism in Adulthood 0(0). http://doi.org/10.1089/aut.2018.0057

Sasson, N. J., & Morrison, K. E. (2019). First impressions of adults with autism improve with diagnostic disclosure and increased autism knowledge of peers. Autism23(1), 50–59. https://doi.org/10.1177/1362361317729526

Willey, L. H. (2004). Disclosure and Self-Advocacy: An Open Door Policy. In Shore, S. (Ed), Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum (pp. 177-191). Shawnee Mission, KS: Autism Asperger Publishing Company.

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Posted in Relationships, Winter 2020 Issue | No Comments »

Local Nonprofit Dog Treat Company Expands Their Mission of Employment for the Disabled Community

Good Reasons® Dog Treats, a non-profit dog treat company that provides employment for people with autism and other developmental disabilities is growing its mission.

Since launching in 2014 Good Reasons has shown significant growth, now offering 6 delicious flavors of their all natural, human grade, locally baked and packed dog treats. They are now selling nationwide via their website in addition to several Whole Foods, Hannaford’s, Tops, and DeCicco’s supermarket locations. Last year Good Reasons was also featured on QVC and ABC World News, and have received generous donations from Thomas Agnes Carvel Foundation, Sterling Bank, Workforce Development Institute, and won a generous grant from Impact 100 Westchester.

The Good Reasons Team hard a work for local company Brewster Plastics

The Good Reasons Team hard at work for local company Brewster Plastics

All these factors have enabled Good Reasons to grow their mission even further, introducing GR Pack, a fulfillment and packaging division. GR Pack provides a needed service in the community by being a fulfillment partner for companies seeking assistance with assembly and packaging of various products. GR Pack strives to offer integrated and meaningful employment for people of all abilities.

“Opening our new Westchester space as given us the opportunity to create more jobs.  We all desire a purpose in life, and a job where you can make friends, and money is a way to achieve that.” – Dr. Vicki Sylvester, CEO.

The continued development of this local social enterprise also means more community involvement and partnerships. Good Reasons donates treats on a regular basis to local shelters, and SPCA’s and often runs promotions that raise money and awareness for other great causes. Most recently, during October Good Reasons donated $1 from every pink Bella P.B bag sold to Miles of Hope Breast Cancer Foundation. In November, many bags of Tucker’s Turkey flavor were donated to NY and CT shelters, the Patterson Rotary and local food pantries. During the month of Dec many not for profits will receive donations of the red Gracie’s bag, ensuring lots of furry friends are spoiled during the holiday season too.

Recently a vendor and featured panelist at the YAI Hudson Valley Autism Conference, the Good reasons team is always looking to spread awareness of their mission, and that of likeminded companies. Welcoming many visitors to the new space and always seeking ways to improve the lives of people with disabilities. Hosting Brewster Chamber’s networking breakfast and marketing seminar is one way Good Reasons attracts new eyes to what they are doing. “We want other local businesses to see with their own eyes the impact having a job can have on someone’s life. Hopefully by seeing our mission in action other employees will be more motivated to embracing the many benefits of an integrated work team.” – Kelly Apfel, Communications and Development Manager.

Excited for the launch of their new website in the early New Year, Good Reasons will be regularly highlighting the importance of what they are doing within the community. Additionally, several new human consumable products will soon be available for sale, all delicious recipes created by their very own Chef and culinary graduate, Allan Katz.

The the search for more packaging jobs continues, and Good Reasons role as a business leader within the community is something the entire team is passionate about.

Good Reasons’ parent company, Community Based Services (CBS) has been providing residential and community support programs since 1981. With 10 residential homes providing 24/7 care for people with disabilities, a growing day hab without walls program, respite, supported and pathways to employment, the agency leads the charge for self-advocacy and community inclusion for all people. Most recently, CBS opened up a new farm in Hopewell Junction, NY. This Dutchess location will be home to the Cultivating Dreams program and will offer overnight respite capabilities.

About Good Reasons®

Good Reasons® is a dog treat company on a mission. Located in Westchester, NY they create healthy and delicious dog treats while providing opportunity and employment for people of all abilities. Founder, Vicki Sylvester, Ph.D., merged her professional experience as an advocate for the disabled community with her love of animals to create a company that supports an integrated workforce. Unleashing love and potential in every bite!

For more information, contact Kelly Apfel, Communications & Development Manager at 914-236-1129 and info@goodreasons.com or visit www.goodreasons.com.

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Posted in Employment, Winter 2020 Issue | No Comments »

A Personalized Approach: Three Portraits of Incorporating Neurodiversity in Life Skills Programming for Autism

A woman sits at a table with a thick sheet of paper and a photograph of a landscape, drawing the scene in confident, hard strokes. A man measures out his ingredients, careful to get the exact measurement. A woman steps forward on stage, dancing with the music and singing out to the audience. Each of these individuals has autism, yet they are clearly a talented and diverse group. This should not be surprising when remembering neurodiversity. Neurodiversity accounts for the differences in each person’s brain, a concept which has gained popularity in the autism community (Baron-Cohen, 2019). In addition to creating an inclusive point of view, this idea is valuable for developing independence for those with disabilities. Vista Life Innovations, a nonprofit organization devoted to assisting adults with disabilities achieve personal success, takes neurodiversity into account with functional skills support. During Vista’s programming, students and members work to develop necessary skills for independent living while discovering their passions. The philosophy of Vista is simple: Everyone has a unique mind with neurological differences; therefore, students will learn best with individualized programming.

Daniel and Emily Wing, Vista Program Instructor, assisting with Thanksgiving preparations

Daniel and Emily Wing, Vista Program Instructor, assisting with Thanksgiving preparations

Sometimes, a neurological trait can be both beneficial and a source of challenges. One Vista member, Cara, has a strong sensitivity to sensory information. Walking into a room with faint background music can be an overwhelming experience. To combat this obstacle, Cara has developed specific coping strategies for dealing with unpleasant noises like humming to drown out the sound. Often, mentally preparing herself and choosing to engage can be enough to help Cara overcome her sensitivity. For instance, Cara elects to plug her ears and turn on the garbage disposal at her house when it needs to be run, even though the sound bothers her. Being highly aware of sensory information can be difficult, but it supports Cara to do what she loves most: art. Samantha Listori, Vista’s resident artist, has worked with Cara for five years. She explains, “Cara’s very good with color. She sees colors in a photo that other people wouldn’t notice and creates optical mixing by separating every tone.” Ironically, the same awareness of sensory details that challenge Cara auditorily is what helps her to have a strong artistic perspective. Her small drawings are bold, richly saturated and show a clear eye for proportion. Currently, Cara is working with Listori to apply her drawing skills in the realm of large oil paintings. She is even collaborating with a prominent New York City gallery owner to further her work. As a quiet individual, she enjoys time by herself, art provides Cara with a world of her own to explore and share with others.

“Did you see how flexible I was just now?” Daniel asked, before giving his Program Counselor Ashley DiGuilio a huge smile and a high five to celebrate. Daniel has a warm personality with a smile that beams through any picture. He is incredibly goal-oriented and one of his long-term goals is to be a “flexible thinker.” For Daniel, being a flexible thinker means that he will work through unexpected changes. Many individuals with autism demonstrate rigidity or inflexibility toward unwelcome news, change, or abstract concepts, according to Kenworthy and Strang of the Organization for Autism Research (2017). To assist with this goal, DiGuilio breaks down unexpected changes into smaller parts so Daniel can process one component at a time. She can recall a few instances when Daniel had to wait for his spending money because of bank delays. While not the ideal situation, Daniel decided the best thing to do was wait patiently instead of becoming anxious after DiGuilio described that there was a “tech issue.” To prevent feeling blindsided by upcoming changes, Daniel prefers to write down the expectation for the situation in clear steps. That way, he can process the information at his own pace or refer to his notes. Daniel may struggle with rigidity, but his inflexibility can be used to overcome itself. Kenworthy and Strang (2017) argue that inflexibility can be a strength, writing, “Inflexibility drives persistence and perseverance.” Daniel’s strong worth ethic and goal-oriented personality are likely linked to the inflexible nature he is working hard to combat. With his determination, DiGuilio and the Vista team are hopeful to see how he will continue to grow as a flexible thinker.

Cara with completed drawing for “Artist of the Month” exhibition at JJ’s A Gift Shop in Oracle, AZ

Cara with completed drawing for “Artist of the Month” exhibition at JJ’s A Gift Shop in Oracle, AZ

Christine is charismatic, highly organized, and often relied on by those around her. She has an exceptional memory, which serves her in multiple areas of her life. Although she does not use a calendar or even store contact information in her cell phone, Christine precisely recalls names, dates, and phone numbers with ease. On top of managing her medication, finances, and work responsibilities, Christine is a regular actress and dancer for Vista’s A Shared Stage Productions. Last year, Christine took on two roles in Sister Act involving dialogue, singing, choreography and multiple costume changes. Yet, she was often the one helping her fellow actors. Kitty Fitzpatrick, Vista’s Director of Engage Services and an acting enthusiast, reminisces, “In Sister Act, we were backup dancers for Deloris. She picked up the dancing right away. I found myself leaning on her to remind me of the moves.” Christine’s strong memory and attention-to-detail could be linked with inflexibility, a trait she shares with Daniel. Inflexibility often means “being able to keenly focus on certain activities, topics, or routines…Think of the young person who fixates on a certain topic (like computer programming) and becomes a true “expert” (Kenworthy & Strang, 2017). Cara, Daniel, and Christine benefit highly from routine and can struggle when that routine changes. Unlike Daniel, who prefers to process these adjustments with written communication, Christine prefers verbally reviewing the change. Saying an unpleasant fact out loud helps her become okay with it. Likewise, talking to her family over the phone is another way she sorts through her emotions.

Neurodiversity is one piece of a larger concept: everyone is different. At Vista, members work with staff to come up with goals and strategies that will work for them as they gain the skills needed for independence. While the path to independence can be difficult for those with autism, it is important to remember the talents, strengths and resolve that can come from having an atypical brain.

Becky Lipnick is the Organizational Communications Coordinator at Vista Life Innovations. For 30 years, Vista has supported individuals with disabilities achieve personal success. Learn more at www.VistaLifeInnovations.org or contact Becky at BLipnick@VistaLifeInnovations.org.

References

Baron-Cohen, S. (2019, April 30). The Concept of Neurodiversity Is Dividing the Autism Community. Retrieved November 29, 2019, from https://blogs.scientificamerican.com/observations/the-concept-of-neurodiversity-is-dividing-the-autism-community/.

Kenworthy, L., & Strang, J. (2017, August 29). Use Inflexibility to Teach Flexibility. Retrieved November 29, 2019, from https://researchautism.org/use-inflexibility-to-teach-flexibility/

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Posted in Neurodiversity, Uncategorized, Winter 2020 Issue | No Comments »

Becca Lory Hector Joins Autism Spectrum News Editorial Board

Mental Health News Education, Inc., publisher of Autism Spectrum News, is proud to announce that Becca Lory Hector, CAS, BCCS, Autism, Neurodiversity, & Inclusion Consultant/Speaker/Author/Advocate, has become the newest member of the ASN Editorial Board.

Becca Lory Hector was diagnosed on the autism spectrum as an adult and has since become a dynamic autism advocate, consultant, speaker, and author. With a focus on living an active, positive life, her work includes autism/neurodiversity/inclusion consulting; public speaking engagements; a monthly blog, “Live Positively Autistic”; a weekly YouTube news show, “Neurodiversity Newsstand,”; and being an Assistant Editor/Feature Writer for Spectrum Women Magazine.

Becca Lory Hector

Becca Lory Hector

Becca has published multiple articles about life on the autism spectrum with the goal of spreading acceptance, building understanding, and encouraging self-advocacy. She spent four years supporting the autism community in the non-profit sector in her work for grass-roots organizations that provide resources and services directly to individuals on the autism spectrum. Becca left non-profit to pursue dual certifications as a Certified Autism Specialist (CAS) and Cognitive Specialist (BCCS), and to open her autism consulting business.

An animal lover with a special affinity for cats, Becca spends most of her free time with her many animals, her husband Antonio Hector, and their Emotional Support Animal (ESA), Sir Walter Underfoot. Sir Walter Underfoot travels, does woofing engagements, and has his very own Instagram to help share with the world his life as an ESA to an autistic adult.

Pat Schissel, LMSW, ASN Editorial Board Member and New York Director of AANE, remarked, “Becca is perfect for the Editorial Board and I’m proud to serve with her! She has solid instincts and an excellent feel of timely and valuable information.”

David Minot, Associate Director of MHNE and Publisher of Autism Spectrum News stated, “Becca has been instrumental in developing this issue on Neurodiversity and has been an unofficial advisor for many issues in the past. I look forward to working with Becca in her new role as we continue on our mission of providing a trusted source of science-based information, education, and advocacy for the autism community.”

To see the full listing of the Autism Spectrum News Editorial Board, please visit www.autismspectrumnews.org/about/.

 

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Posted in News, Winter 2020 Issue | No Comments »