ASC Thoughts

VOLUME 24 � ISSUE 8 � MARCH 2016

The Spectrum

The Autism Support Center

Contact us:

SUSAN GILROY, EDITOR

CO-DIRECTOR

978-624-2302

GLORIA RICARDI CASTILLO

CO-DIRECTOR

978-624-2301

WHITNEY RYAN POSADA

SENIOR COORDINATOR/

BROKER

978-624-2305

STACEY CRUWYS

COORDINATOR/BROKER

978-624-2347

JACKIE MURPHY

COORDINATOR/BROKER

978-624-3721

PHYLLIS KIZNER

ADULT SPECIALIST

978-624-3744

The Autism Support Center has got your back. I should know. ASC ran the first support group I ever attended – back in 1992. I received a packet designed for parents, introducing them to the world of autism. This was the first bit of literature I’d come across that was helpful. The phone num-ber to reach them was, believe it or not, 1-800-7AUTISM. I may be con-fusing some details, I’m kind of old. 53 years = 100 in autism years.

The ASC support group was run by Gail Kastorf at the site of the Greater Boston Arc, in an office building basement, on uncomfortable chairs, in the bowels of Brighton. But to me this meeting room was a refuge, my place of heavenly comfort because that was where I discovered that oth-er autism parents existed. Back then when people with autism were be-ing diagnosed at a rate of 2 in 10,000, it was hard to find guys like my little son Nat. And the parents of the non-autistic kids in the playground felt to me like tormentors, or at least Mean Girls. They scorned Nat like he was the monster, when in fact they were. Imagine this: no other kids

like yours, no parents who understood what was happening to your family, no books in the library except the DSM-III, and no Internet.

Gail led us masterfully through civil conversations about school programs, approaches, and the inevi-table Day of Diagnosis stories. I made friends there that I am still in touch with. I saw myself in them. I heard about schools to avoid, or to run to. I saw the future, listening to the dad of a teen with autism.

Later on, I went to a workshop and I heard Gloria Ricardi Castillo talk about her teenage son, and I recognized Nat once again.

You get to a point when you think you don’t need support groups, when you believe you are a sup-port group. But in this particular universe, nothing lasts. Behaviors come back, meds fail. Children transition into adulthood.

I’m at the point where I can now write about adulthood. I’ve even interviewed one of the autistic kids, from the ASC support group, for my book. I’ve given talks at the ASC – a circle completed. Now I run into Gloria and hug her and we can read each other’s minds. We’re the autism veterans now. We’re there for the newer generation, the 1 in 45’s.

But the truth is I’m never going to feel like I’m all set, thanks. I’ll never retire from Autism. And the day will come when I will need someone again. And I know that ASC will be a place that will hold me up – again. Happy Birthday, ASC!

April 30, 2016

CONTRIBUTED BY

SUSAN SENATOR, PARENT AND AUTHOR

2

Reinforcement

IT’S A FACT: Northeast Arc is the second largest Arc in the country.

By Bailey Strangman, M.A., BCBA, Northeast Arc Behavioral Health Services

Reinforcement is a concept within Applied Behavior Analysis that refers to a stimulus in the environment that increases the likelihood that a behavior will happen again in the future. Reinforcement is also a type of consequence – meaning it happens after a behavior. When we think of a consequence we might think of something being taken away or a reprimand, however, a consequence is simply a stimulus (an item, object, person, etc.) that is either added or removed directly after a behavior happens. This is where reinforcement comes into play. When we reinforce a behavior we want to make sure that we are either adding or removing something after the behavior happens that we know is going to increase the behavior in the future. So if we want a behavior to happen more often we must reinforce it! Types of Reinforcement: There are two types of reinforcement; positive and negative. In behaviorism we don’t think of “positive” and “negative” as values (meaning they aren’t thought of as “good” or “bad”). Think of this concept in a more mathematical way: “positive” in behavioral terms simply means adding something and “negative” simply means removing something. Positive reinforcement is when we add something as a consequence (after the behavior) that is going to increase the likelihood that the behavior will happen again in the fu-ture. Negative reinforcement is when we remove something as a consequence (after the behavior) that is going to increase the likelihood that the behavior will happen again in the future. This concept can get confusing, but using a visual example sometimes helps:

When to Use Reinforcement: Reinforcement should be used to increase a behavior. In ABA we use reinforcement to increase functional and appropriate skills such as functional communication (conversational skills, expressing wants/needs, labeling, identifying people/places/things, etc.), daily living skills (showering, food prep, brushing teeth, cleaning up, etc.), social skills (appropriate play, novel play, turn tak-ing, eye contact, etc.) and many other behaviors that make up different skill sets. Reinforcement should be given immediately after the behavior you are looking to increase happens (or as immediate as possible). Rein-forcement (or a reinforcer) should be something that is preferred/pleasant/desired, and often works best when delivered only when the de-sired behavior happens. When delivering a particular reinforcer, it is a good idea to pair that reinforcer (toy, edible, etc.) with a more natural form of reinforcement such as social praise or recognition. Be as specific as possible when giving praise as part of your reinforcement: for example, instead of just saying “good job!” you could say “I really love how you took your time with that!” or “I’m so happy you have safe hands right now”. Being as specific as possible with social reinforcement provides you an opportunity to let the individual know exactly what they did right. Reinforcers can be a range of different things because every individual has different likes and dislikes. Some common categories of rein-forcers are attention (listening to someone, tickles, hugs, high-fives, silly faces, saying “great job!”, etc.), preferred items (iPad, games, movies, music, bubbles, preferred toys, etc.), preferred edibles (such as small treats/snacks etc.), and even alone time (removal of atten-tion or demands). Reinforcer vs. Bribe: Sometimes the difference between using reinforcement and offering a bribe to change behavior can be tricky to un-derstand. A good system of reinforcement is set into place before the behavior happens, in an attempt to increase the likelihood of that behavior happening again in the future. A bribe is something preferred that is offered once a behavior is happening in an effort to decrease or stop that behavior. The difference between the two is basically just timing. Here are some examples to help portray this concept:

Positive Reinforcement Negative Reinforcement

Adding something as a consequence: behavior likely to happen more in the future. Example: Behavior: You studied for a test Consequence: You got an A+

Impact: You are more likely to study for your next test to get another A+.

Removing something as a consequence: behavior likely to happen more in the future. Example: Behavior: You buckle your seat belt Consequence: The beeping in your car stops

Impact: You are more likely to buckle up every time to stop the beeping.

Reinforcement: Before the individual engages in the behavior: “If you get all of your stars at school today, after school we can go get an ice cream.”

Bribe: After the child is engaging in a behavior: “If you stop fighting with your brother we can go get an ice cream.”

(continued on page 3)

3

Reinforcement (continued from page 2)

IT’S A FACT: Northeast Arc is the second largest Arc in the country.

By Bailey Strangman, M.A., BCBA, Northeast Arc Behavioral Health Services

Consistency is Key: In order for reinforcement (or a reinforcer) to be effective, it needs to be delivered consistently (every time the behav-ior happens or the specified criteria is reached). Making sure to deliver reinforcement consistently ensures that an association between a behavior and the reinforcer is made. Since reinforcement needs to be delivered consistently it is important when choosing an item to act as a reinforcer, that you choose something that is desired by the individual, but that can also be given quickly after the behavior happens (if it is largely time consuming to start or finish, it may not be an effective long-term reinforcer). When Reinforcement Isn’t Working: Sometimes a reinforcement system stops working or a reinforcer becomes in-effective. This might be due to inconsistency in how/when reinforcement is being delivered, or it could be due to satiation. Satiation is when an individual grows tired or board of a particular item/object and no longer desires that object because they may be receiving too much of it, or have been re-ceiving it for too long of a time. This can happen when only 1 particular reinforcer is used for a long period of time without rotating in new preferred things. It can also happen if an individual is receiving a particular item/object as reinforcement for a behavior, but also receives that item at other times as well. When using reinforcers for a particular behavior, it is best to isolate those items to only being given when the desired behavior occurs, and frequently rotating what is being given between several preferred items/objects. Fading out Reinforcement: Eventually we want to fade out how often an individual is receiving a particular reinforcer, and switch to a more natural form of reinforcement. We want to make sure that we think about what type of reinforcement the individual would receive for the behavior in a natural context, and then slowly fade out other forms of reinforcement that may not be as natural. In a learning setting, we may initially provide an individual with a preferred item for engaging in eye contact during a conversation; however, in a natural context that preferred item would not be given each time the individual made eye contact. Instead, social reinforcement in the form of attention from another individual would be given; so the goal of the reinforcement schedule would be to pair the item the individual is receiving with social reinforcement (attention), and then fade out the preferred item until just the attention is being given.

Contact Northeast Arc’s Behavioral Health Services at 978-624-2340.

HATS OFF TO ASC

Join us for a wonderful evening celebrating our 25 years of service!

April 30th at 6:30 pm

Spinelli’s of Lynnfield

We will be honoring five parents who have

“Gone the Distance to Make a Difference”

Laurie Flutie, Doug Flutie, Jr. Foundation for Autism

Lenard Zohn, Autism Eats

Mary Kae Marinac, Autism Hikes!

Ally Dickenson, Understanding Cam Foundation

Nancy Lucier, Brave Blades

Dinner, music, and friends!

$75 per person

Contact ASC at 978-777-9135 to reserve your seat!

4

5

Autism Adulthood

Autism: 1 in 45 according to the CDC

NEW STAFF AT ASC

ASC is pleased to announce that Phyllis Kizner is joining our staff as an adult specialist. Phyllis’s main focus will be working with the “newly eligible” adults and their families to explore re-sources and services. Phyllis will also collaborate with other community organizations to meet the needs of the adult ASD population. Phyllis’s prior experience is with Lahey Health as a family partner and TILL, Inc., as a behavioral monitor. She is a trained educa-tional advocate as well. Phyllis lives in Peabody with her husband, Rick, and their chil-dren, Liana, who is a special education attorney, and their son, Robert, who is a young adult with autism. Welcome, Phyllis!

Autism Adulthood features thirty interviews with autistic adults,

their parents, caregivers, researchers, and professionals. Each

vignette reveals firsthand a family’s challenge, their circumstanc-

es, their thought processes, and their unique solutions, and plans

of action. Sharing the wisdom that emerges from parents’ and self

-advocates’ experiences, Susan Senator adds her own observa-

tions and conclusions based on my long-term experience with au-

tism. Told in an honest and approachable style, Autism Adulthood

paints a vivid and thought-provoking picture of many people grap-

pling with grown-up, real-life autism. This is the only book of its

kind, as real families share their stories and their creative solu-

tions.

6

7

The Northeast Arc Recreation Department will once again offer our creative movement program led by Movement Therapist Mary Beth Trapeni, MA, ADTR.

February 27th – April 2nd 2016 June 4th – July 9th 2016 September 3rd – October 8th 2016 December 3rd – January 7th 2017

Location: Northeast Arc Center for Developmental Excellence, 6 Southside Road, Danvers, MA

Program Fee: $90 9:00 to 9:45 (Ages 2 to 6 years)

10:00 to 10:45 (Age 7 to 11 years) 11:00 to 11:45 (Ages 12 to 17 years)

The Creative Movement group is an integrated group that allows children of all abilities to express themselves through movement in a relaxed and creative atmosphere. A love for music and movement is all that is needed. Bring your energy and creativity! The therapeutic goals for the group will be on improving body image and body awareness, motor skills, social skills, and stress management. Note: The max capacity for each group will be 8. The program pro-vides a minimum 1:4 ratio of staff to students. To register for the Creative Movement spring courses, contact Adam Quinn either by phone at 978-624-2308 or via email at AQuinn@ne-arc.org

Join Bridgewell and Northeast Arc for the Conquering the

Cliff: Autism’s Journey into Adulthood conference on

Thursday, April 14, 2016 at the Sheraton in Framingham, Mas-

sachusetts. This full day conference is an opportunity to net-

work with up to 500 human services leaders, professionals and

family members. The conference will feature 18 workshops on

a wide variety of topics.

Many families have described the transition from the educa-

tional system to adult services for their children with autism as

“falling off a cliff.” As more and more individuals with autism

are entering the adult world, service providers and families

have been working diligently and creatively to develop sup-

ports and service models to meet the needs of this population.

We are determined to conquer the cliff so that individuals may

be successfully integrated into the adult world.

Bridgewell is proud to be a leader in serving these young

adults. We are excited about the opportunity to address this

emerging need by bringing together experts and innovators in

the field to network and share their knowledge.

Jeri Kroll, Director of Pro-

fessional Development

jkroll@bridgewell.org

781-776-4137

Conquering the Cliff Conference

Creative Movement

8

Acton ASC Sponsored; Target Group: Mandarin-speaking par-ents. Acton Memorial Library, 486 Main St (Rt. 27) Acton; bi-monthly meetings TBA; Parent facilitator: Wen Li Contact ASC 978-777-9135 or asc@ne-arc.org for info. Burlington ASC sponsored; Target Group: Parents of children with ASD Burlington Public Library, 1st Mondays, Time 6:30 pm Parent facilitator: Christine Curtin Contact ASC at 978-777-9135 Danvers AANE/ASC sponsored; Adults with Asperger’s Pizza and Game Night 6 Southside Road, Danvers, 1st Thursday, 6-8 pm $12 for pizza, salad, dessert, beverage. Prior registration required. Facilitator: Gail Kastorf 617-393-3824 Danvers New group forming! AANE/ASC sponsored; Target Group: Parents of adults with Asperger’s 6 Southside Rd, Danvers; 2nd Thursdays, 6:30 to 8pm Facilitator: Gail Kastorf 617-393-3824 Fee: $90 for 6 sessions, $45 for 2nd parent of same

adult Danvers ASC sponsored; Target group: Parents of children with Intensive Needs 6 Southside Rd, Danvers; 3rd Wednesday, 10-11:30 am Contact: Susan Gilroy at 978-624-2302 or sgil-roy@ne-arc.org Danvers ASC sponsored; Target Group: Parents of children under age 5

6 Southside Road, Dan-vers; 3rd Thursday,

5:30pm Contact: Jackie Murphy at 978-624-3721

Danvers ASC/AANE sponsored; Target Group: Adults (18+) with Asperger’s syndrome 6 Southside Road, Danvers; 3rd Thursdays, 6:45 to 8:00pm. Contact facilitator Gail Kastorf at 617-393-3824 or gail.kastorf@aane.org Lawrence ASC sponsored; Target Group: Spanish-speaking parents of children with disabilities Families & Youth Initiative, 130 Par-ker St, Lawrence; 3rd Friday, 9:30-11:30am Contact facilitator Gloria Castillo 978-624-2301 or gcas-tillo@ne-arc.org Lynn Family Resource Center sponsored; Target group: Spanish-speaking par-ents of children with disabilities Contact: Aymee Lucifora 978-624-2381 Newburyport ASC sponsored; target group: Parents of chil-dren & teens; Newburyport Five Cents Savings Bank, State Street. Parent facilitator: Nancy Lucier. For more info contact Susan Gilroy at 978-624-2302.

SUPPORT GROUPS

9

Opportunity at AFAM

IT’S A FACT: Northeast Arc is the second largest Arc in the country.

AFAM Web/Social Media Manager Position

Background: Advocates for Autism of Massachusetts (AFAM) is a statewide, grassroots organization founded in 2004 to strengthen the well- being of all those affected by Autism Spectrum Disorder (ASD) in Massachusetts. AFAM’s mission is to work toward the availability of essential supports for all Massachusetts citizens with autism, so they may lead full and safe lives in the community, to the maximum of each individual’s abilities. AFAM’s members have autism, have a loved one with autism, or provide services to individuals with autism in the Commonwealth.

AFAM desires to increase its capacity to engage in effective legislative and administrative advocacy in Massachusetts on

behalf of those affected by Autism Spectrum Disorder (ASD). To that end, AFAM will expand its use of a variety of Internet-

based applications to (i) create, share or exchange information, ideas, conversation, photographs and videos, (ii) build rela-

tionships and (iii) promote collaboration and action around AFAM’s annual priorities and other activities in virtual communities

interested in AFAM’s mission.

Job Description:

AFAM is seeking to contract for a part-time Web/Social Media Manager (SMM) to develop AFAM’s web and social media presence and manage the AFAM website and all other AFAM social media accounts. The holder of this position shall be considered an independent contractor and shall be paid on an hourly basis at a rate to be negotiated. The amount of work required will be on an as needed basis and will vary; there is no minimum number of hours per week, month or year guaran-teed. However, it is not expected that the time required fulfilling the job responsibilities in the busiest of weeks will exceed six hours. The W/SMM will (a) oversee the AFAM website (ensuring that website content is accurate and regularly updated), coordinat-ing with AFAM’s webmaster, and (b) implement a social media strategy using a combination of tools such as Facebook, Twitter, Instagram and YouTube, as well as other social media accounts. The W/SMM shall be responsible for the security of passwords to AFAM social media accounts and for the upkeep of these accounts. The W/SMM will attend monthly meetings of the AFAM Executive Committee. The W/SMM will coordinate with the Chair of AFAM, the AFAM administrator and the chairs of committees, subcommittees and tasks forces to develop and post content for the AFAM website and other social media accounts, all in accordance with the AFAM Web/Social Media Policy, adopted December 17, 2015 (and as it may be amended from time to time).

Qualifications:

The W/SMM should: be expert in developing social media strategies to build audience relationship and optimize web content; possess demonstrated knowledge of end-user computer technologies, including website and social media programs and

applications and social media analytic tools such as Google Analytics; possess excellent communications skills, including strong and proven writing ability; possess the ability to work collaboratively to get the work done in a timely and expeditious manner; demonstrate knowledge of autism and advocacy; and demonstrate solid understanding of AFAM’s mission and voice.

Please send letter of interest and resume to Advocates for Autism of Massachusetts c/o Judy Zacek, 217 South Street, Waltham, MA 02453 or email letter of interest and resume to AFAMoffice@yahoo.com

10

11

IT’S A FACT:

Ask the

Advocate

Autism is the fastest growing serious developmental disability in the United States.

ADVOCACY WORKSHOP

Ask the Advocate! March 2016 Comment: I was at a team meeting today and when we

asked about reading tutoring for my son, the team chair-

person said he would have to consult with the Special

Education Director. Is that true?

Response: No, that would be considered working out-

side the team. IEP development is a team process and

there should be appropriate team members at the meet-

ing to help make those specific decisions.

If you need an advocate, please call our Advocacy

Intake Coordinator at: 1-978-762-8352

The Autism Support Center is pleased to offer...

How to Successfully

Negotiate & Collaborate in the IEP Development!

Learn how to communicate effectively and prepare for your next team meeting!

Thursday, March 17th, 5:30 to 7pm

Presenter: Nancy Lucier, NeArc Advocate

Northeast Arc Center for Developmental Excellence

6 Southside Road, Danvers

Please reserve your seat by contacting Jackie Murphy at 978-624-3721 or jpmurphy@ne-arc.org

12

IT’S A FACT:

Transition Tip

Autism is the fastest growing serious developmental disability in the United States.

SOCIAL SECURITY BENEFITS

TRANSITION TIP #6

Choosing whether or not to disclose your disability is a big decision. Students with dis-abilities must learn how to make informed decisions about disclosing their disability, decisions that will affect their educational, employment, and social lives. Research demonstrates that making the per-sonal decision to disclose a disability can lead to greater confidence in yourself and your choices. *Disclosure is a very personal decision, a decision that takes thought and practice.

Workshop for parents: Social Security Benefits March 9, 6 to 8 pm Northeast Arc, 6 Southside Road, Danvers Understanding SSI and Social Security Benefits for Kids and

Young Adults

• SSI for Work-Effect of Wages

• SSDI, Medicare

• MassHealth CommonHealth: Eligibility for Adults and Children

Back by popular demand! Learn important facts about govern-

ment benefits. What does it all mean?

Presented by Linda Landry of the Disability Law Center

This workshop is free but you must register so we can notify

you in the event of cancellation.

Sponsored by Family Resources. For more information and to register, contact Aymee Lucifora at 978-624-2381.

13

Join Northeast Arc at

Lucky Strike Bowling Lanes 73 Buffum Street, Lynn

March 8 & 22

April 12 & 26

3:30 to 5 pm

Join us for a fun afternoon of bowling.

Please contact Family Resources to register! Free to families eligible for services through the Dept of Developmen-tal Services/North Shore. Contact Fariba O’Donald at 978-624-2380.

Expanded Sensory friendly movies at AMC

IT’S A FACT: The Autism Support Center was founded in 1991.

Join AMC Theatres and the Autism Society special sensory-friendly showings of popular movies. The Sensory Friendly Film program has expanded to four showings per month.

• The second and fourth Tuesday and Saturday.

• Family-friendly movies will continue to show Saturdays, starting at 10am local time

We've added Tuesday showings at 7pm local time that may appeal to others on the autism spectrum. Local theatres: AMC Burlington, 20 South Ave, Burlington AMC Braintree, 12 Grandview Road, Braintree AMC Framingham 15, 22 Flutie Pass, Framingham, Mass. 17014 AMC Tyngsboro 12, 440 Middlesex Road Tyngsboro, Mass. 01879

AMC Loews Methuen 20, 90 Pleasant Valley St. Methuen, Mass. 01844 AMC Theatres (AMC) and the Autism Society have teamed up to bring families affected by autism and other disabilities a special op-portunity to enjoy their favorite films in a safe and accepting envi-ronment on a monthly basis with the "Sensory Friendly Films" pro-gram. PLEASE CHECK WITH YOUR LOCAL THEATER TO CONFIRM

DATE, TIME & PRICES. This is NOT an ASC program!

FAMILY BOWLING IN LYNN

14

6 SOUTHSIDE ROAD, DANVERS MA 01923

The Spectrum The Spectrum is a monthly electronic publication of the Autism Support

Center. This newsletter is published to inform parents and professionals

of resource information, upcoming events, and other autism-related

topics. ASC is funded primarily by the Mass. Dept. of Developmental

Services. The views ex-

pressed do not necessarily reflect those of the funding source. ASC

does not endorse any product, service or theory referred to in this news-

letter. Articles, resources and announcements are included for infor-

mation only.

Anyone wishing to contribute information for this newsletter should send

it to asc@ne-arc.org or to our mailing address Parent contributions are

encouraged. Announcements are included as space is available.

INFORMED. EMPOWERED. CONNECTED.

PLEASE CONTACT

ASC AT 978-777-9135

OR VISIT HTTP://NE-ARC.ORG/SERVICES/AUTISM-SERVICES/

FOR MORE INFORMATION.

Save the Date!!!

April 30, 2016

Spinelli’s

Lynnfield