AUTISM AWARENESS MONTH
 
April is Autism Awareness Month and Tuesday, April 2, 2019 is World Autism Awareness Day. The Collaborative Systems Committee and the Communications Committee of the New York Council on Child and Adolescent Psychiatry (NYCCAP) has organized a campaign to promote Autism awareness with its member.  NYCCAP has posted information for you and your patients to check out. We hope the information can enrich your care with patients! 

Epidemiology/Medical Facts--Comorbidities
  • The Centers for Disease Control and Prevention (CDC) estimates autism’s prevalence as 1 in 68 children in the United States. This includes 1 in 42 boys and 1 in 189 girls.
  • Certain medical and mental health issues frequently accompany autism. They can include gastrointestinal (GI) disorders with the prevalence ranging 23% to 70% including but not limited to functional constipation and reflux.
  • The reported prevalence of epilepsy in ASD ranges from 5 to 38%, while the general childhood population has a 1–2% prevalence.
  • The prevalence estimate for sleep disturbances in the ASD ranges 50-80% including difficulties in prolonged sleep onset latency, frequent night awakenings, short sleep duration, and early rise times. This sleep disturbance can exacerbate comorbid daytime problem behaviors.
  • 20–50% of children with ADHD meet criteria for ASD and 30-80% of children with ASD meet criteria for ADHD
  • Up to 80% of children with ASDs experience clinically significant anxiety including social phobia, generalized anxiety disorder (GAD), obsessive–compulsive disorder (OCD) and separation anxiety disorder (SAD).
 
Clinical Resources in NYC:  How to access, what is available
  • In NY state, the Office for People with Developmental Disabilities (OPWDD) is the system that can provide supports and services to youth and adults with autism. An individual who has a developmental disability and lives in New York State can request a basic eligibility review by calling an OPWDD office directly and attending a Front Door presentation. Click Here
  • There are five Developmental Disability Regional Offices (DDROs) that are located throughout New York State each with an eligibility coordinator who can help walk a family through the assessments and documents needed to determine eligibility. Click Here
  • Organizations that help with assessments to determine eligibility vary from county to county and might necessitate documentation from the pediatrician, school, or a psychologist. Click Here
  • NYSTART is a community-based program that provides crisis prevention and response services to individuals (6yo+) with intellectual and developmental disabilities and is available to clients who are considered OPWDD eligible. Referrals can be made by individuals, families, service providers, hospitals, psychiatric centers and other crisis services. In the Metro area, NYSTART teams can be accessed by calling: Brooklyn and Staten Island: (646) 565-5890, Bronx, Manhattan and Queens: (212) 273-6300 For Long Island, call (516) 870-1647
  • Did you know NYC offers a free course title “Mental Health First Aid Training”? These trainings provide proven practices to help recognize early signs and symptoms of mental illness and substance misuse. It trains you to respond to and help someone in distress until they can get the professional care. You can learn more and register for this free eight-hour training at http://www1.nyc.gov/site/doh/health/health-topics/mental-health-first-aid.page
  • Do you know about HITE? HITE, which stands for Health Information Tool for Empowerment, is an online database connecting New Yorkers to over 5,000 free and low-cost health and social services. For more information, please check out: http://www.hitesite.org/

Crisis Resources:  SMART, what to do to navigate ER/medical hospitalizations
  • Mental Health Professionals can make a referral for the NYC Children Mobile Crisis Team by calling 1 888 NYC WELL. The NYS OMH aimes to have a response time of two hours between 8:00 a.m. to 10:00 p.m. For hours between 10:00 p.m. to 8:00 a.m., you can expect a phone response within 30 minutes.
  • The Children’s Hospital of Philadelphia – Center for Autism Research has a great resource for parents with autism called CAR AUTISM ROADMAP. For more info, check out: https://www.carautismroadmap.org/
 
Social Resources in NYC
  • Lincoln Center hosts “relaxed performances” which are adapted for neurodiverse audiences, including children with autism or other disabilities. There are no restrictions around noise or movement, audience members are welcome to leave and re-enter the theater, and adjustments are made to these productions to reduce sensory stimuli. Visit Kids.LincolnCenter.org/RP for more information and a full listing of this season’s relaxed performances.
  • The Theater Development Fund (TDF) coordinates Autism-Friendly Broadway performances in NYC every year. For more information, visit: https://www.tdf.org/nyc/40/Autism-Theatre-Initiative
  • Drums, checked. Piano, checked. Music for Autism is an organization that puts on autism friendly, interactive concerts throughout the New York City. It’s an organization originally founded in United Kingdom and made its debut in the US in 2007. For a list of upcoming concerts, check out, http://www.musicforautism.org/concerts/#NewYork
  • Mark your calendar and walk for a cause. Autism Speaks will be having its annual walk in NYC on Sunday, 9/15/2019 at South Street Seaport. For more information, check out: http://act.autismspeaks.org/site/TR?pg=entry&fr_id=3836
  • Do you know what ABLE is? The Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act of 2014 allows individuals to set up tax-exempt savings accounts for individuals with disabilities to be used on qualified disability expenses without risks of losing their SSI and Medicaid benefits. For more information: https://www.mynyable.org
 
Advocacy

  • How can I interface with legislators to help shape policy for individuals with autism?
The Autism Speaks Advocacy Ambassador Program is designed to enhance Autism Speaks’ advocacy efforts by promoting outreach to federal legislators. Grassroots volunteers serve as Ambassadors and are the main point of contact for their assigned legislator and will work directly with Autism Speaks staff both in local and national offices. You can learn more at https://www.autismspeaks.org/advocacy or contact advocacy@autismspeaks.org.
 
What are the educational rights for youth with autism?
Advocates for Children of New York is an organization specializing in educational rights for students with disabilities. Parents can become informed of their legal rights and have consultants negotiate on their behalf to obtain the services their children need to succeed in school. Call AFC's Education Helpline: (866) 427-6033 Monday to Thursday 10:00 a.m. to 4:00 p.m.
 
Research
There are research programs starting from families and researches with the intent to share knowledge. One such is the Simons Foundation Autism Research Initiative. Their mission is to improve the understanding, diagnosis and treatment of autism spectrum disorders by funding innovative research of the highest quality and relevance. https://www.sfari.org/.
 
 



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