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Relationship Forum for Adults Living with Autism

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What we're about

WE'D LOVE TO MEET YOU IN PERSON AT LAKE COMPOUNCE CAR SHOW! COME JOIN US!

https://www.facebook.com/DrRogerJou/posts/178381966209237

CELEBRATING WORLD AUTISM MONTH! https://www.facebook.com/DrRogerJou

NEWS: READ ABOUT US IN THE NEW HAVEN REGISTER!

https://www.nhregister.com/health/article/Study-testing-first-medication-to-treat-symptoms-12725784.php

READ ABOUT DR. JOU IN THE DAILY BEAST & THE MIGHTY:

https://www.thedailybeast.com/can-a-pill-help-autistic-kids-conquer-social-anxiety

https://themighty.com/2018/03/balovaptan-autism-roche-pharmaceuticals/

RESOURCES AVAILABLE! Looking for a doctor or program? Please click above "More" and select "Message boards" to browse our works in progress.

Please follow or like us by visiting our updated Facebook page (http://meet.meetup.com/wf/click?upn=pEEcc35imY7Cq0tG1vyTt4Qsz0OkZRmNmr-2BCWT5l72Kt8VEF3pdjbYFUe60Rkj7A4Ca-2FPf-2FYunlA-2BYgY-2FfS4l7zbt3vHREg73NWk6gCuXn03tuzLaUkH85f4sXI5Q3B9_bo5HUed-2F9tA933KhDDX2mIt0fa1Vv3aa9f9Kg9MEG74QujSESQ-2BClxNTVirUQ-2BBUHSIl61LLu4btzwVoffw1-2B8ydUGlaWJygqdRLtpqsDYQLV-2BnKorOynNN47W4Zkma3hLUEgQfHY5G7bm71QBLHQJrNQlCZ6exF-2Bq-2FdaZxYUYe5RZ23cqA8NrwZxSb2J4zrRQQyxZ6Lg-2Fl2Ws1HlEx0WA-3D-3D)

INTRODUCTION

Community Autism Socials at Yale (Project CASY) is a university-organized online / local community of individuals living with autism and the families, friends, and professionals involved in their lives.

The main purpose of Project CASY is promoting the quality of life of individuals living with autism. Project CASY does this using an organic collaborative approach, where community members meet together in person to share their ideas and experiences while benefiting from the knowledge of clinicians and researchers at the Yale Child Study Center and other organizations. The online component allows for an extensive network spanning the entire state of Connecticut (and beyond) promoting diversity on many levels and curbing social isolation.

In-person meetings typically take place weekly where members can regularly assemble to nurture relationships and maintain ongoing dialogue in the service of the community’s goals. All meetings are facilitated by faculty and staff of the Yale Child Study Center who have dedicated their careers to autism in both clinical and research arenas. Professionals from other organizations often join to facilitate as well. As the community grows, subgroups will also proliferate to accommodate different interests. The website will also evolve into a hub and repository for sharing general information relevant to the community’s goals, interests, and activities.

Since our founding in April 2014, all our programing is free and offered at no cost. There is also no cost to join Meetup or Project CASY; however, memberships in both are highly encouraged to ensure effective communication and maximum community benefit. Many Project CASY groups emphasize social recreation; therefore, these groups are designed to be enjoyable above all things. While they are offered at no monetary cost, we understand that they are an investment in time and energy. Since we do not consider them therapy or treatment (and they should not replace formal therapy or treatment), we can focus on creating shared enjoyment among group members, laying a strong foundation for building healthy and lasting relationships.

We have several types of groups and meetings:

Social Gathering for Adults Living with Autism (GALA): The purpose of Social GALA is to provide a supportive community and safe environment to nurture the growth and development of adults living with autism. This is done through partnership between the adult autism community and professionals at the Yale Child Study Center. Social GALA is largely driven by the community with facilitation by Yale faculty and staff. A variety of approaches are implemented and tailored to the interests and needs of attendees. We socialize, play games, and discuss issues relevant to young adulthood, all while eating delicious New Haven pizza. Read about our Social GALA in Autism Spectrum News. This issue is dedicated to supporting adults living with autism. Simply view the PDF online and scroll to page 8:

http://www.mhnews-autism.org/back_issues/ASN-Spring2016.pdf

Matched Groups for Children, Adolescents, and Adults: Integrating smoothly into group settings may be challenging for some individuals living with autism. Therefore, we strongly believe that groups need to be “matched” so those involved have the best chance of connecting positively with each other. That is, participants should be compatible in as many areas as practical. Some basic areas include age group, communication abilities, motivation, compliance, hobbies and other interests. Consequently, we like to get to know potential participants well in order to determine who benefit most from a smaller matched group. To accomplish this, we schedule face-to-face interviews with the potential attendee and/or close family member. Interviews are conducted throughout the year, so participants can be matched and enter these groups on a rolling basis.

Multiplayer Game Night: Spending an evening in the Yale Child Study Center’s Cohen Auditorium may not sound enticing to most youth, but what if we include four multiplayer gaming consoles displayed on large flat screen displays? If you’re old school, then try some of our board games or relax on your own while watching a movie on our giant LCD TV. Under 18 years old? No problem because parents get their own room. Ah, the perks of being a member! NOTE: There will be separate events for different age groups (child, adolescent and young adult).

Autism Parent and Provider Talkabout (PPT): This is our own version of the old classic and it's completely different! The name says it all: parents/family of individuals with autism meeting with community providers and other professionals to talk about autism. We welcome you to discuss your concerns and ideas, share your expertise, and consult with other parents/family members and local autism specialists. Refreshments and lots of useful information will be served! Please note that these meetings can occur in different locations; however, the majority will take place in New Haven, CT.

Chat 'n Chew (CNC) for Autism Research: CNC was the name of Project CASY’s first group when we started in April 2014. After a long hiatus, we are bringing back this old favorite with a new twist. Clinical researchers and scientists meet with the greater autism community to discuss and share information about autism research. CNC consists of a brief presentation followed by questions and open discussion. In addition, any opportunities for research participation will also be shared. Topics are chosen by the organizers or suggested by members. As the name implies, food and drink will be offered. All Project CASY members are welcome to attend and guest always welcome! The only requirement is genuine interest in autism research.

Project CASY is sponsored in part by The Daniel Jordan Fiddle Foundation Adult Autism Research Fund, a generous gift from the Rosen family, and the research/clinical practice of Dr. Roger Jou at the Yale Child Study Center.

INSTRUCTIONS FOR SIGNING UP:

There's more to this website, but in order to view it, you must be a member of Project CASY. To become a member, please do the following:

1) Click on the red "request to join" button at the top of the page, then click on the "sign up with email" button once it appears. This will allow you to sign up for meetup.com. It is free and the information requested in minimal.

2) Simply enter a user name, your email address and password. Click on the red “continue” button under the password field. Please note that a Facebook or Google account is NOT needed to sign up. You simply click on the red "continue" button and ignore the blue "continue with Facebook" and white "continue with Google" buttons.

3) After you are a member of meetup.com, return to the Project CASY front page http://www.meetup.com/ProjectCASY/ and click on the red "join us" button. This will allow you to join Project CASY which is also free. You'll be asked some simple questions about yourself. It will ask you to upload a picture which can basically be any picture you like.

After you are a member, you can see all the content of the Project CASY website. Feel free to check out our upcoming meetings and browse the message board. As a member of Project CASY, you will be notified via email with any updates.

Thanks for your interest and look forward to meeting you in person!

Roger J. Jou, MD, MPH, PhD
Assistant Clinical Professor & Clinician
Yale Child Study Center
230 S Frontage Rd, Rm G-130
New Haven, CT 06519-1124
Phone: (203) 927-3970
Fax: (203) 737-2797

OPEN RESEARCH STUDIES:

Can we help children and adolescents with Autism make sense of the world?

Dear Parent/Guardian,

We hope that this letter finds you and your family well. We’re writing to you because we are recruiting for a new clinical study called the aViation study.

The aViation study will test an investigational medicine for 'high-functioning' autism spectrum disorder (ASD). The investigational study drug blocks a hormone receptor in the brain that is linked to the control of socialization, stress, anxiety and aggression.

As you may know, no medications have been approved to treat ASD’s core symptoms yet. That’s why we believe this study is very important and would be grateful if you’d consider enrolling. We are looking for children and adolescents between the ages of 5 and 17.

Participation lasts for up to 39 weeks. For 24 of those weeks, they will take daily doses of either the investigational study drug or a placebo (a look-alike) that contains no medicine. Both the investigational study drug and the placebo are small tablets that can be swallowed whole or dissolved in liquid.

Participants and their parent or guardian will visit a study clinic around once every 6 weeks (about 7 times in total). This will allow the study team to assess their general health, social communication skills and social interaction skills.

In between these clinic visits, a nurse will need to take some additional blood samples. To do this, they’ll either visit you at your home or you’ll be asked to go back to the clinic.

Please be reassured that you would not have to pay for any study-related treatments, lab tests or assessments. Also, reimbursement for travel may be available.

If you’d like to know more, please contact us via email or phone about the aViation study. And remember:
participation is entirely voluntary – your decision will not affect your child’s regular medical care.

Thank you for your time.

Roger Jou (roger.jou@yale.edu; 203-927-3970)
Sarah Boland & Emma Lecarie (sarah.boland@yale.edu, emma.lecarie@yale.edu; 203-737-4378)

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