One in 68 Children has Autism

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Adjusting to life changes for people with disabilities

December 14, 2015 3:00 pm Published by

Life is full of changes, some of these changes are easy to adjust to while others are more challenging. While growing up, I became isolated and withdrawn whenever I had to change much or when change was expected of me. I hated to admit it at the time but the reality was that I hated change and changes happening around me. This became a problem whenever I was expected to do any of my responsibilities and I really disliked it. As a result, my self-esteem suffered and I would throw tantrums and become irate when things did not go the way that I wanted them to go. However, some changes were not all that bad. These changes have made me the person and individual that I am today strong and willful, but cautious about what lays ahead in my future. These changes have also made aware of a future which I now know is promising and fulfilling and is somewhat predictable.

Here are some tips on how I have dealt with changes. Being prepared is one way that can help while adjusting to change. This can be done by making a schedule and sticking with it. Learning how to be flexible by keeping an open mind can also help while adjusting to change. Communicating by expressing ideas, wants, and desires freely. Learning how to do activities that you enjoy, listen to music do art projects this, and spend time with friends. This helps by dealing with stress and can help clear your mind. Finally, allowing others to help by asking for feedback and support can be helpful by allowing you to see things from another point of view and perspective. Give yourself a pat on the back and congratulate yourself on the work that you have done. This will emphasize your efforts and make you aware of them.

 

 

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Danielle Lazzara serves as a Development Assistant in QSAC’s Development Department and as an instructor in the Self-Advocacy Training Program funded by the Long Island Unitarian Universalist Fund (LIUU Fund) of the Long Island Community Foundation. Danielle is a self-advocate and presents regularly at local and regional workshops and conferences on the topic of self-advocacy. She has been a member of QSAC’s Development Department since 2013 and writes regularly for onQ, QSAC’s blog.

The Importance of Employment for Individuals with Autism

September 28, 2015 3:00 pm Published by

For as long as I can remember, I have looked forward to having the opportunity to work. After all, we ask children in elementary school what they want to be when they grow up. We are encouraged to work hard in school, so that we can go on to have successful careers.

But what about those who are diagnosed with autism or other developmental disabilities? A recent study found that 1 in 3 young adults with autism had not found gainful employment, nearly seven years after graduating. Many adults with autism are given volunteer opportunities, or part-time, unpaid internships. Although these are important opportunities in order to help them increase their vocational skills, there comes a time when these individuals are ready to seek out meaningful employment, and receive compensation for their hard work.

Individuals with autism work diligently to become more independent across all areas of their lives. From the moment they start receiving services, children with developmental disabilities work on goals that will help them become more independent. For children, learning how to become more independent consists of working on Activities of Daily Living (ADL) skills, such as brushing their teeth, or getting dressed by themselves. As they grow older, learning to become more independent consists more of working on Independent Living (IL) skills, such as cooking and cleaning, traveling, and learning to manage finances.

The first time any of us really earn our own income is when we get a job. Whether this is part-time or full-time, we finally have the opportunity to earn our own money (the key words here being earn, and own). There is a certain sense of satisfaction and pride in being able to have your own money, and be able to do many more things as a result. Having a job, and earning wages, exponentially increases our independence.

For those on the autism spectrum, there are a number of obstacles that stand between them and gainful employment. Many individuals struggle with social cues, managing their emotions, dealing with different sensory triggers, following directions/instructions, planning and organizing, adapting to changes, and so on. Even the standard small talk of an office can be overwhelming to someone who has autism.

That being said, many adults on the spectrum would rather find ways to work through the challenges of being in a work environment, rather than not having the chance to work at all. It can be incredibly discouraging and frustrating to not have the opportunity to make money for yourself, and be able to use that money how you want to. The money we earn from working allows us to spend time with our friends, participate in different activities, buy clothes and other items for ourselves, even be able to eat what we want to! As much as there are different ways to supplement income for individuals with disabilities, it is not the same as earning your wages based on the work you have done. There is a difference between receiving an income, and earning one.

Many adults on the spectrum are aware of the limitations on what they can do when they do not have paid employment. In my experience, speaking with adults with autism about their goals, several have expressed to me how much they desired to have a job, just like I do. They were able to connect the fact that we were close in age, and that having a career is something they would like to do by a certain age as well. It is difficult to encourage someone with autism to become more independent, if they do not feel that they have the opportunity to do so.

Thankfully, there are more opportunities and initiatives for individuals with developmental disabilities to obtain employment. OPWDD is providing new ways for individuals to seek out meaningful work across the state. I have also observed more individuals attending college, which opens the doors for them to pursue a number of different careers. More initiatives are taking place to broaden the job opportunities that exist for individuals with developmental disabilities. With the proper supports in place, adults with autism can find success in different careers. For example, with the guidance of a job coach, an individual can learn to overcome their specific deficits and challenges in order to perform well at a job of their choice.

There are no guarantees in terms of whether or not any of us can obtain employment, disability or not. However, adults with autism and other developmental disabilities should be provided with the same opportunities as the rest of us, if it is something they would like to do and if it would be appropriate for them. Being a contributing and independent member of society is something that many adults on the autism spectrum highly value, and obtaining and maintaining gainful employment is an important way for them to achieve this.

 

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Sara Giangiobbe, MAT serves as a Medicaid Service Coordination Supervisor in QSAC’s MSC Department. She has been serving in a multitude of roles with QSAC since 2004. In addition to her professional role in the field of autism and developmental disabilities, she has a younger brother who is diagnosed with autism. She is a proud sibling and professional, and is also a regular contributor to onQ, QSAC’s blog.

Strategies for Managing and Communicating Emotions

September 21, 2015 3:00 pm Published by
  1. Handling stress
  2. Using time effectively
  3. Saying what you feel
  4. Dealing with change
  5. Understanding the point of view of others
  6. Taking risks and knowing when to take them

The emotional challenges above are just some of thencountered in our day to day routines.

One of the ways to consider handling and being under stress is to stay in the moment. The way we are involved in handling it is part of the solution, and remaining present is part of handling this challenge.

Sometimes just being in the moment and looking at the big picture is the best remedy.

Personally, I feel that when I am prepared for a situation I am can put my best foot forward. This is so important and helps me be clear about what my needs and wants are. These are all tied and linked to communication.

Language is not the only way that one can express themselves.

One of the ways life is challenging is the way that we become involved in dealing with and handling changes in everyday routines. These challenges are impacted by the way we react to them emotionally.

And then the most challenging aspect of these ways to handling everything is by being clear and getting an understanding of the other person’s point of view.

This involves not only being in touch with how you feel but also being considerate and being in tune with the other person’s thoughts, feelings, wants, and desires

Finally, I am going to talk about challenges and taking risks.

I personally believe that only risks that are important are the ones that we don’t know that we can take. Taking small steps towards our goals in communication and  becoming in tune with what we want are the best ways to understand ourselves and the environment around us.

 

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Danielle Lazzara serves as a Development Assistant in QSAC’s Development Department and as an instructor in the Self-Advocacy Training Program funded by the Long Island Unitarian Universalist Fund (LIUU Fund) of the Long Island Community Foundation. Danielle is a self-advocate and presents regularly at local and regional workshops and conferences on the topic of self-advocacy. She has been a member of QSAC’s Development Department since 2013 and writes regularly for onQ, QSAC’s blog.

 

Independence for individuals with ASD

August 17, 2015 3:00 pm Published by

The movement towards independence in adulthood is a strong motivator for families and individuals with autism spectrum disorder (ASD). Even with a strong desire, reaching the maximum level of independence has proven to be more difficult due to core deficits of the disorder. As students transition from 1:1 support within the educational system to the adult world, it has become clear that direct support from others needs to be faded dramatically so that individuals are more capable of reaching higher levels of independence. With an array of independent skills that need to be systematically taught to individuals with ASD (ranging from washing their hands to using public transportation), it is important to break down skills in a way that can be taught effectively. Organization is key for teaching skills, and this can be done by focusing instruction to decrease distractibility, set up productive sequencing, increase generalization, and promote independence without the assistance from others (Dunlap & Johnson, 1985).

Work systems are an evidence-based practice that visually structure sequences of skills that can be practiced across settings (Hausler & Bernard-Opitz, 2011). They use visual supports that provide extra information to the learner. Visual schedules often tell the individual where to go, yet work systems include what to do once they are in the correct location. Information provided includes what tasks they need to complete, how many tasks to complete, how the individual will know they are finished, and what the individual needs to do once all tasks are complete. All information is provided visually, and is dependent of adult support. Work systems can be used with a variety of activities, and can include:

  • Preparing a meal
  • Riding the subway or bus
  • Completing a hygiene activity such as washing hands
  • Vocational task such as sorting office materials

 

AKSarticle At QSAC’s Hollis Day Habilitation Program, structured work systems are in full effect in a vocational greeting card program that  our individuals are beginning to participate in. The work systems follow a routine- work flowing left to right, and have a location  for finished products making it very clear for the individual to know exactly what is required to complete the task in full, and  what to do when they are finished.

Structured work systems are a great way to increase independence for individuals with ASD. The work systems provide  opportunities to organize materials to meet the needs of the learners by decreasing distractibility, setting up productive  sequencing, increasing generalization, and promoting independence without the assistance from others.

 

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Clare Penny, M.A., BABA serves as the Assistant Clinical Director for QSAC’s adult day habilitation programs. Professionally, she has been working with individuals with Autism Spectrum Disorder for the past seven years. She has her Master’s Degree in Applied Behavior Analysis, with an emphasis in Autism. Her current research interests focus on structured work systems and the use of the AFLS assessment for curriculum building. Clare is beginning her PhD course work in Applied Behavior Analysis in January 2016.

 

 

AnyaSilverAnya K. Silver, M.A., BCBA Director of Clinics Services for Day Habilitation, has been working in the field of autism and applied behavior analysis for over 20 years. Anya received her Bachelors Degree in 1995 in Psychology from Queens College. She completed her Masters Degree in 1996 in Child Development at Tufts University. Anya worked in the field of Early Intervention and Autism for over 10 years supervising ABA programs across NYC and Long Island. Currently, Anya works with the adult autism community. She is the Clinical Director of Day Habilitation programs for Quality Services for the Autism Community (QSAC). Anya is a Board Certified Behavior Analyst and an active member of the autism community. She presents at local and national conferences on topics related to autism intervention. Anya is a Media Watch Writer for the Association for Science in Autism Treatment (ASAT). She has presented research on staff training and published articles on humanistic and behavioral perspectives as well as teaching deception skills to students with autism spectrum disorders.

 

 

Dunlap, G. & Johnson, J. (1985). Increasing the independent responding of autistic children with unpredictable supervision. Journal of Applied Behavior Analysis, 18, 227-236. 

Hausler, A., & Brenard-Opitz, V. (2011). Visual support for children with autism spectrum disorders. Shawnee Mission, KS: AAPC Publishing.

 

My Job as the Self-Advocate Liaison

August 3, 2015 3:00 pm Published by

This past year has been a challenging one as much as a rewarding one. When I first started working for QSAC, I did not realize the impact I would have as a self-advocate and mentor to young adults with disabilities, but as time went on, myself and others have come to understand this more and more.

Danielle Lazzara (center) pictured with other members of QSAC’s Development Department: Michelle Debisette (left) and Joseph Amodeo (right)

I realized that this learning experience was just as new to me as the individuals I was mentoring. The way I learned in this endeavor was through respect and willingness to grasp information from others, a s well as being open to replicate in return.

Advocating is a skill that has ignited the fuel of my mind, bringing out my passion and opening my heart. I learned this when I realized my true potential for this task. I’ve shared my story at numerous presentations, hoping that it influences others in my position to be greater and become better advocates. During this process, I have learned that change is a natural part of life. What would have been acquaintances have become friends and unfamiliar strangers have common bonds.

Learning my skills have made an impact on me from being a volunteer to better worker. Having rights and understanding the power of them is truly necessary such as: being aware of having choices, getting involved in healthy relationships, working and/or volunteering, having free speech, and owning up to our responsibilities. This is supported by our amendments in the Bill of Rights.

Being safe in this community is a big right for everyone. One way that I learned how to be safe in a community is by having support staff, helping me get familiar with the community and feel safer. Knowing this, I have advocated my experience in hopes that others will follow my example to feel safer in the community.

I have also attended many workshops and volunteered for many organizations such as Americore and O.P.W.D.D. I do this continuously and in my spare time to set an example for others like myself. My most valuable experience has been these connections that have brought out my true voice, and these impacts on others and those around me. I hope to continue to be a voice for many others, and I hope to help them create their own voice.

 

Danielle Lazzara serves as a Development Assistant in QSAC’s Development Department and as an instructor in the Self-Advocacy Training Program funded by the Long Island Unitarian Universalist Fund (LIUU Fund) of the Long Island Community Foundation. Danielle is a self-advocate and presents regularly at local and regional workshops and conferences on the topic of self-advocacy. She has been a member of QSAC’s Development Department since 2013 and writes regularly for onQ, QSAC’s blog.

 

 

 

Adult Independence

April 20, 2015 3:00 pm Published by

When we think of autism spectrum disorders, we often think of the children on the spectrum. We know that 1 in 68 school children has autism (CDC) and that the NYCDOE estimates that 1 in 10 city school children will have an autism diagnosis before they graduate. What we don’t often focus on is that over the next ten years, 500,000 children with autism will become adults, 90% of adults with autism are unemployed or underemployed, and 79.1% of young adults with autism experience residential living after their secondary education (Roux et al., 2013). This tells us that we have to do a better job at increasing independence and vocational skills in our adults with autism; and we need to determine how this can be accomplished, how students are taught, what skills are essential for the best outcomes and when do we start teaching these skills. There is a tremendous amount of research conducted with children with autism and very little published research on adults. We as educators/clinicians need to know what will enable a 21 year old program graduate to be prepared enough to get a paid job and live independently or as close to that goal as possible.

Of particular concern would be what skills need to be taught, what systems have to be faded, the level of prompt dependency, the schedule of reinforcement, and the dependency on 1:1 instruction.  Skills in communication, social interaction, self help/independent living, pre-vocational/vocational, and leisure pursuit are essential for a productive adult life; what are we doing to teach our elementary and school age students these skills? We as educators/ clinicians have to focus on ensuring a smooth transition, focusing on teaching these skills in the elementary and secondary school years, fading out 1:1 instruction earlier, understanding that adult services do not support a 1:1 ratio, focusing on small/large group instruction and increasing independence and vocational skills across the board. Ultimately we need to shift our focus and ensure that everything we are doing for our younger students on the autism spectrum is translating to effectively supporting our adults on the autism spectrum.

 

Gerhardt, P.F.  & Lainer, I. (2011), Adressing the Needs of Adolescents and Adults with Autism; A crises on the Horizon. Journal of Contemporary Psychotherapy, 41: 37-45.

Roux, A.M., Shattuck, P.T., Cooper, B.P., Anderson, K.A., Wagner, M., & Narendorf, S.C. (2013), Postsecondary Employment Experiences among Young Adults with an Autism Spectrum Disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 52 (9): 931-939.

An Explanation On Self Advocacy

December 15, 2014 3:00 pm Published by

Being able to advocate for one’s self is something that we don’t often think about on a regular basis. For those of us without communication deficits, it is easy to let others know what you want in your life. You are in charge of your own decision making; from small things such as wanting to go to the store to buy a bottle of soda, to the larger things such as choosing a career path. This ability to advocate for your personal wants and needs does not come as easily to those with autism and other developmental disabilities.

Recently, QSAC started a self advocacy group, which is designed to empower individuals with disabilities to speak up for themselves. The group promotes independence, and educates its members about their rights and responsibilities. Over the last several weeks that the group has been held, I have seen tremendous growth from each person. Individuals with disabilities are being encouraged to think about their future, and what they would like to obtain in order to lead meaningful and fulfilling lives.

This is not to say that self advocacy undermines or eliminates the need for having family, friends, and professionals as advocates. Much like with our own decision making, it is important to receive feedback and support from the important people in your life to help guide you along the way. Similarly, sometimes the people in our lives do not agree with the decisions we make. It is important to consider safety and other concerns involved with each decision, and work together to find a way to make things happen successfully with minimal risk.

If you have a loved one with autism or other developmental disability, there are a number of ways you can encourage self advocacy, and work with them to understand how they can speak up for themselves. Even if your loved one does not use verbal language to communicate, it is still possible for them to learn to advocate for themselves, in whatever way they can. The journey of self advocacy can begin with small choices in their daily lives, and eventually move to bigger choices of what their goals are for their future.

The ability to advocate for one’s self is a vital part of learning responsibility, and working towards a bright, independent future. By encouraging individuals with autism and other developmental disabilities to advocate for their own wants and needs, we will be able to better support them, and help reach their fullest potential.

EFFECTIVELY GETTING YOUR POINT ACROSS

September 24, 2014 2:16 pm Published by

When I was younger I would throw temper tantrums and rebel when things would not go my way. I also had a number of anxieties and overcoming them was difficult for me. These were some of the ways I communicated to people as well my peers. Whenever I felt a certain emotion I had a challenging time expressing them, because of those things I was envious of my peers.

Often if I contacted someone and they would not return my call I would worry excessively and contact them over and over until I would hear back from them. Also when I would do something wrong by acting impulsively I would lie or mislead people to try to get myself out of trouble. At this stage in my life I need prompting to remember to do things. Routines have become very important for me.

Having mentors and other peers in my life that set great examples have been beneficial to my growth. If I could advise anyone, I would say to effectively communicate with people,  learning self-awareness is key.  Self awareness is important for setting boundaries and making your needs known.  Setting boundaries also allowed me to see that I needed patience in all situations.

 

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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.

DEALING WITH SENSORY OVERLOAD AND STRESS

May 5, 2014 10:59 am Published by
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Danielle LazzaraWhen 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.

A Self-Advocate’s Story

January 31, 2014 9:34 am Published by

Danielle LazzaraHello! 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).

ABOUT US

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.