When I was younger all of my behaviors were due to the stress around me. Today when I don’t manage things effectively I become stressed out and confused. My environment then becomes an issue which can be both good and bad. During those times it’s as if my mind goes blank and I have difficulty concentrating. This is why structure is an important factor in my life. I work best when my schedule is planned out and I manage to abide by it. Having a place to relax and just sit and think can be helpful. There are some things that I do that can relieve my stress and could help you relieve yours too.
Having a sense of humor is important because it enables one to laugh at things instead of being sad about them. Noticing your breathing is also quite important. Writing your feelings down can be a way to get things off of your chest instead of holding them inside. Listening to music allows you to escape from your reality. Getting your rest is essential. Taking breaks and naps can be a way for your body to relax.
Our seven senses and sensory overload
It is important to be aware of all of your senses. It is also important to know when your senses are being overloaded and how this affects your body. We are all born with seven senses: Sight, sound, touch, taste, smell, balance ( vestibular), and body awareness (proprioception). People with an Autism Spectrum Disorder (ASD) can be over-sensitive as well as under-sensitive in all of these areas. There are some ways that can really help an individual experiencing this. The three points to remember are :
1. be aware: look at the environment to see if it is creating difficulties for people with an ASD. Can you change anything?
2. be creative: think of some positive sensory experiences
3. be prepared: tell people with an ASD about possible sensory stimuli they may experience in different environments.
Researching is also important so that you can be aware of new treatments for sensory overload and stress. Watching videos on Youtube showcasing other people who also have ASD has been very helpful. It shows that you are not alone in your experiences and that if we share our experiences, we will be able to help each other more effectively.
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Danielle Lazzara serves as the Development Assistant in QSAC’s Development Department. In her role, she makes calls to parents and supporters about upcoming QSAC events. In addition, Ms. Lazzara works closely with QSAC’s special events team on soliciting items for our annual silent auction. As a woman on the autism spectrum, she is an active self-advocate for the autism community having presented at an array of community-based events including QSAC’s Bridges to Transition on April 2, 2014.
By Catherine Falleo, M.S.Ed., SAS, SDA, and Anya K. Silver, M.A., BCBA
For typical developing children, the process of reaching independence in adulthood seems to come naturally. However, this is not so for individuals with an autism spectrum disorder (ASD). As children with an ASD develop and grow into adults with an ASD, the idea of college or job training, a career, and living on their own comes with an overabundance of uncertainty. For many individuals with an ASD, they do acquire and demonstrate a wide range of skills, but often during transitioning to adulthood, when levels of support begin to fade and independent use of these skills is expected, generalization of skills becomes challenging. Independent functioning may be difficult for adults with an ASD due to the core deficits of the disability.
Adults with an ASD, in order to achieve independence, should develop the necessary skills and supports to be advocates of their own lives and to be free to make things happen for themselves without an inappropriate amount of assistance from others. Achieving this requires a strong adaptive behavior repertoire. These are the daily living skills that most typical individuals seem to learn naturally, but must be systematically taught to many individuals with an ASD. The term adaptive behavior refers to the skills or abilities that people need to function independently at home and in the community and includes everything from interacting and communicating with other people to shopping, budgeting, cleaning, eating, dressing and grooming, following directions, completing tasks, getting to work on time, reading, computation, being responsible for oneself, and becoming financially independent. Reaching true independence for adults with an ASD means developing meaningful friendships, being competitively employed, and living independently.
QSAC has four Day Habilitation (DH) Programs and three Day Habilitation (DH) WOW (Without Walls) Programs. Developing meaningful friendships for our consumers is an essential aspect across all of our programs. Our goal is to foster friendships among the consumers we serve as well as their ability to develop new friendships in their communities.
We have assisted our consumers in developing several social groups based on their common interests, passions, hobbies, and experiences. We facilitate a monthly Gamers Club where consumers across all of our DH programs who have shown an interest in gaming come together to share games while also playing games and comparing strategies together. The supervisors of the program work collaboratively with the staff and consumers in developing the monthly Gamers Club agenda so to ensure that it incorporates important social, communication, and adaptive skills throughout the event.
Another development has been the Spa/Wellness Club for our female consumers across programs who have shown an interest in the area of beauty, specifically with regards to hair, nails, makeup and fashion. Some consumers are interested in learning how to apply makeup while others specifically want to create their own fashion designs. The supervisors of the program work collaboratively with the team to incorporate into the Spa/Wellness Club agenda the opportunity to work on health awareness, specifically exercise and nutrition.
Additionally, due to our large number of comic book enthusiasts and those interested in anime, a Comic Book Club was developed. The supervisors of the program worked collaboratively with the staff and consumers to incorporate within the monthly agenda topics such as character discussions, character drawings, and comprehension of material read. In addition to our social clubs, our consumers participate in talent shows where they get to showcase their wonderful abilities from singing to dancing to stand up comedy, which offers the opportunity for our consumers to cheer on their friends, and for some, learn to be supportive of others.
In addition to developing meaningful friendships we are also committed to providing opportunities for our consumers to prepare for work environments and become competitively employed. For many of our consumers, we are providing formal curriculum programming to prepare them for these environments. Some of the program goals our staff are assisting our consumers with are within the areas of vocational tasks, schedule following, clerical skills, computer data entry, appropriate social behavior in the community, problem solving, communication skills, behavioral self-monitoring skills, self-care skills, budgeting, completing work applications, travel skills, and cleaning. Four days per week our consumers have the opportunity to generalize these skills to a vocational setting in the community. Some of our volunteer training sites include but are not limited to clothing stores, shoe stores, furniture stores, pharmacy/drug stores, preschools, colleges/universities, pet stores, senior centers, supermarkets, churches/community centers, non-profit organizations, book stores, food carts, and preparing food/deliveries and office/clerical environments. We have the opportunity to observe our consumers in these settings and further develop and enhance their skills by addressing any areas that require further development and practice by providing on the job support, discussing areas of skill development with the consumer, their family, and team of professionals, so that goals can be modified and future goals developed.
Lastly our adult programs are committed to further developing the skills of our consumers to be able to live independently. We have introduced The Assessment of Functional Living Skills (AFLS)TM by James W. Partington and Michael M. Mueller to our program. The AFLS is an assessment tool, curriculum guide, and skills tracking system. It provides information regarding a learner’s skill set and provides a curriculum guide that can serve as a basis for developing learning objectives. We use the AFLS with our consumers at DH to assess skill levels and develop functional, practical, and essential skills of everyday life. The domains covered within this guide are basic living skills, home skills, community participation skills, and school skills. The types of goals our staff have generated for our consumers to strengthen living independently include but are not limited to: dressing, toileting, grooming, bathing, health, safety and first aid, preparing meals, leisure, cooking, learning to physically navigate safely around sidewalks and streets, safety signs, strangers/people encountered while walking or while being transported in the community, basic mobility, shopping, money management, phone use, time, social awareness, and manners.
Independent functioning may be difficult for adults with an ASD due to the core deficits of the disability, however, reducing their dependence on assistance will lead to greater independent functioning and greater levels of social acceptance within the community.
About the Authors: Catherine Falleo M.S.Ed., SAS, SDA, serves as the Director of Clinical Services for QSAC’s Day Habilitation Programs; she can be reached at firstname.lastname@example.org. Anya K. Silver, MA, BCBA, serves as the Assistant Clinical Director for QSAC’s Day Habilitation Programs; she can be reached at email@example.com.
This article originally appeared in QSAC’s print newsletter for Spring 2014.
Yesterday, Monday, April 7, Paul Halvatzis, a QSAC parent and board member, alongside Joseph Amodeo, QSAC’s Director of Development and Strategy, participated in an interview on NBC 4 New York with Roseanne Colletti. The interview focused on the impact of QSAC’s programs and services for children and adults with autism throughout New York City and Long Island. You can watch the interview online by clicking here.
Earlier today, the Centers for Disease Control and Prevention (CDC) announced that autism diagnosis rates had climbed 30% over the past two years from 1 in 88, to 1 in 68 schoolchildren. The report issued by the CDC also mentioned that diagnosis rates among boys is now 1 in 42 boys compared to the earlier statistic of 1 in 54 boys.
As we reflect on the CDC’s new report, please know that QSAC has programs and services for families in need of support. In fact, for more than 36 years we have been providing person-centered educational, residential, habilitation, and support services for children and adults with autism throughout New York City and Long Island. In light of the CDC’s recent report, it’s clear that our mission is more important now than ever before.
If you know of a friend or family member who may be seeking services or supports, please encourage them to visit the “Our Resources”section of QSAC’s website to learn more about our support groups, parent trainings, and other community-based programs.
With the CDC’s new report, I hope you’ll join me and others in expressing the continued need for critical programs and services to support the autism community. As diagnosis rates continue to rise, so too will the need for support services.
Thank you again for your support of QSAC and our programs for the autism community.
Earlier today, Council Member Corey Johnson visited QSAC’s Day Habilitation Program in his district in Manhattan. The Council Member had an opportunity to meet with program participants and staff while also learning more about QSAC’s programs and services for the autism community throughout the borough and the city. Council Member Johnson represents Manhattan’s West Side (District 3) and serves as the Chair of the City Council’s Committee on Health.
Autism Spectrum Disorder (ASD) has been redefined as a neurodevelopmental disorder characterized by impairment in social communication and social interaction and restricted behavior (DSM-5, American Psychiatric Association, 2013). From the clinical point of view, ASD is a very complex condition commonly associated with psychiatric, medical, and behavioral comorbidities (e.g. seizure disorder, anxiety, mood and sleep disorders, eating and behavioral problems) which have been referred to as “challenging behaviors” (Durand, 2014).
Applied Behavior Analysis (ABA) and antipsychotic and anticonvulsant mediations have been used extensively to treat the “challenging behaviors” in individuals with autism spectrum disorder (e.g. irritability, impulsive aggressive behaviors, and self-injurious behaviors). Unfortunately, evidence-based research of anticonvulsant, Lithium, and antipsychotic medications is limited (Rajkumar, 2012), and there is no FDA approved medication to treat these behavioral problems in autism.
Beta-adrenergic receptor blockers (Propranolol, Nadolol, and Pindolol) have been used since 1977 in the treatment of violent behaviors in psychiatric patients (Silver, et al. 1999). In particular, Propranolol is a non-selective beta-adrenergic antagonist that reduces sympathetic nervous system activity. Recently, Propranolol has been used successfully to treat impulsivity, aggressive behaviors, hyper-arousal, and self-injurious behaviors in individuals with autism and intellectual disability. The mechanism of action of Propranolol is not clear, but may involve central Beta-adrenergic blockade, peripheral effects on the sympathetic nervous system or serotonergic blockade (Weinstock, 1980). Beta-adrenergic receptors are wildly distributed in different regions in individuals with autism such as frontal, parietal, hippocampus, midbrain etc. Genetic studies have identified several factors linking Beta-adrenergic receptor blockage to autism spectrum disorder (ASD) (Lurong and Nguyen, 2013).
According to Bodner and colleagues (2012), in a study, which compared individuals with autism and non-autistic individuals on a working memory test, using Propranolol and the ASD group performed significantly better than the placebo group (non-ASD). It has been hypothesized that Norepinephrine (NE) levels are increased in individuals with autism, which may play a role in cognitive impairment associated with ASD. Recent research evidence suggests that Propranolol in doses (< 520mg/qd) improves impulsive aggressive behaviors, self-injurious behaviors, and some aspects of learning in individuals with autism and intellectual disability (Lurong and Nguyen, 2013; Rajkumar, 2012; Fleminger, et al. 2008; Simeon and Hollander, 2001; Shroeder, et al. 2002.).
At the 2013 Society of Neuroscience Annual Meeting in San Diego, David Beversdorf’s group at the University of Missouri, Columbia, proposed that Propranolol was better than a placebo in enhancing functional connectivity between certain brain regions and in improving verbal fluency, verbal problem-solving, and non-verbal behaviors in individuals with autism (Zamzow, et al., 2013; Beversdorfd, et al. 1999, 2008). In addition, according to Beversdorf and colleagues (2011), Propranolol has some language benefits and performance on tasks involving cognitive flexibility of access to networks (Narayanan, et al. 2010, Hecht, et al. 2014).
Further studies are needed to evaluate the non-genomic mechanisms, neurobiological mechanism of Propranolol in context-specific anxiety, and cognitive flexibility and functional connectivity.
The tragic case of Avonte Oquendo prompted Justice Department officials this week to expand a program to help parents obtain tracking devices for children with autism. Avonte, a 14-year-old with autism, was found dead three-months after running away from school. Avonte, who did not speak, was at school in Queens, NY when he ran off on October 4, 2013 at about 12:30 p.m.
The announcement Wednesday means that federal grant funds,which already cover tracking devices for adults with Alzheimers, will also apply to children with autism. Sen. Charles Schumer (D-N.Y.), who had requested the funds, said the devices were available immediately for parents who wanted them. Avonte’s Law, which Schumer proposed in November, would authorize federal funds for the purchase of tracking devices as well as training in their use. Each device costs about $85, plus a few dollars in monthly fees, the Senator said, adding that hundreds of families with autistic children already have used privately funded tracking devices.
A 2012 study by the Kennedy Krieger Institute in Baltimore found that children between the ages of 4 and 7 with autism were four times more likely to wander away than children of the same age without autism. The study, based on a survey of parents of children with autism, found that 49% of the children had tried to run off at least once after they reached age 4. This same study indicated 56% of parents stating eloping is one of the most stressful behaviors they encounter while caring for their children with autism.
While tracking devices are important, educating and training staff who work with individuals with autism is imperative. Avonte’s wandering behavior is called eloping, which means he left a safe location without permission. Eloping is a potentially dangerous behavior that has led to 22 deaths in just 20 months between 2009 and 2011, according to the National Autism Association.
Some children with autism do not understand the spoken word, therefore may not respond to their name when called. Some children cannot speak without support, so they may not be able to ask for what they want and need without augmentative communication, such as PECS (Picture Exchange Communication System) or using sign language . If a child elopes without support, or in the case of using sign language, encounters someone who does not speak the language, it could be incredibly difficult or impossible for the child to communicate any personal information, which would ultimately lead to his/her safe return home.
Many children with autism do not have an age-appropriate understanding or awareness of safety procedures, such as checking for cars before crossing the street, walking within a cross walk or avoiding strangers.
All of these stress the importance of addressing the issues surrounding elopement behaviors. All involved in the care and education of children with autism must be specifically trained in keeping children safe as a means to prevent further tragedy.
Below are some links with helpful information.
The Big Red Safety Box is a resource created by the National Autism Association for The AWAARE (Autism Wandering Awareness Alerts Response and Education) Collaboration.
The Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F; Robins, Fein, & Barton, 2009) is a 2-stage parent-report screening tool to assess risk for Autism Spectrum Disorder (ASD). M-CHAT-R is valid for screening toddlers between 16 and 30 months of age.
The American Academy of Pediatrics (AAP) recommends that all children receive autism screening at 18 and 24 months of age, and the M-CHAT-R/F is one of the AAP’s recommended tools.
The primary goal of the M-CHAT-R is to maximize sensitivity, meaning to detect as many cases of ASD as possible. Therefore, there is a high false positive rate, meaning that not all children who score at risk will be diagnosed with ASD. To address this, the researchers have developed Follow-Up questions (M-CHAT-R/F). Even with the Follow-Up questions, a significant number of the children who screen positive on the M-CHAT-R will not be diagnosed with ASD; however, these children are at high risk for other developmental disorders or delays, and therefore, evaluation is warranted for any child who screens positive.
The M-CHAT-R/F is available for free download for clinical, research, and educational purposes at www.mchatscreen.com.
Hello! My name is Danielle and I am an intern at QSAC’s headquarters in New York City in the Development Department. As a woman on the autism spectrum, I have overcome many things in my life and I am currently involved in getting a Consolidated Self-Directed Services plan through the Office of People with Developmental Disabilities (OPWDD). When I first graduated from high school, the thought of living alone never crossed my mind. I was living with my family and longed for more independence, but knew I would need help and resources from others. On my own, I worked with lawyers and self-advocates to establish my Social Security and Medicaid eligibility and researched and selected an appropriate supportive living situation. I learned about my rights and responsibilities as a person with autism.
After many years of living arrangements that were not ideal for me, I finally found something that was almost perfect for me: my own apartment in a nice neighborhood working with staff I liked. I had independence and financial freedom. After a few years of inconsistent staff and some frustration, I have decided to pursue a Consolidated Self-Directed Services plan so I can have more say in my everyday life. With this new plan, I will have the freedom to select my own support staff and choose how I spend my time and money.
Twenty years ago, this type of decision would not have been possible because these types of independent living services did not exist. I am very grateful that I have this decision to make. People with disabilities have choices and can make their own decisions! Even the wrong ones! Find out what services are appropriate and available for you or your loved one, because everyone deserves a fair shot at a happy and fulfilling life.
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Danielle Lazzara is a lifelong New Yorker who is an actively involved self-advocate who works to ensure that individuals with disabilities know their rights and have access to supportive services. She is an intern in QSAC’s Development Department through the JobPath employment training program (ETP).
QSAC is a New York City and Long Island based nonprofit that supports children and adults with autism, together with their families, in achieving greater independence, realizing their future potential, and contributing to their communities in a meaningful way by offering person-centered services.
QSAC pursues this mission through direct services that provide a supportive and individualized setting for children and adults with autism to improve their communication, socialization, academic, and functional skills.