Living With Autism – Support Groups
Autism Through The Lifespan
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One in 36 children are diagnosed with an Autism Spectrum Disorder (ASD). ASD is often thought of as a childhood condition, with public attention focused primarily on children and the importance of early detection and intervention. Autism is a lifelong condition and the quality of life for individuals with autism depends not only on the foundation provided in childhood, but on ongoing supports that are specific to their educational, medical, social, recreational, family and employment needs as they age.
Early Detection and Intervention
The Autism Society WNY Chapter believes in the importance of early identification and access to effective treatments before age 3. Autism behaviors can become apparent as early as 18 months. Early diagnosis and treatment of autism can reduce lifetime care costs by two-thirds.Building a Strong Foundation from Childhood through Adolescence
The Autism Society WNY Chapter provides information and referral to parents and caregivers building treatment and educational programs so that all children and adolescents can reach their fullest potential. At this stage, it is important to understand how the school system can help (for example, through an Individualized Education Plan) and how to prepare for the transition to adult life.A Life of Happiness and Dignity
The Autism Society WNY Chapter believes that every adult with autism should have access to services and supports that maximize independence and secure the highest quality of life possible. For some, employment and living in the community are goals to pursue during adulthood. For others, being in a safe and fulfilling environment both at “home” and in the community is a goal. Self-advocacy is also important to many people on the spectrum, as more people with autism are speaking out about their experiences, identities and needs.The Autism Society Western New York Chapter is a mostly volunteer organization. We hold twice yearly workshops and provide information and referral through the three critical stages of life to people with autism and their families and the professionals who work with our children.
Autism Through The Lifespan:
Local Support Groups
Akron Parents of Children with Special Needs hosts workshops and discusses and finds plans to help children with challenges within school, extracurricular activities or family situations with the overall goal of inclusiveness. Meets once a month virtually. Date and time listed on Facebook: Akron Parents of Children with Special Needs. Contact Nicole LaMonte-DeGolier 818-625-0486 or Akronspecialneeds@gmail.com.
Buffalo Autism Parent Group A group for parents and caregivers of children with autism. Participate in-person at Buffalo State College, 103 Ketchum Hall, Room 211, 1300 Elmwood Ave., Buffalo, NY 14222 or via Zoom. Meets “Teenth” Wednesday of each month from 6:30 pm-7:30 pm. Go to https://www.ochbuffalo.org/care-treatment/Autism-Spectrum-Disorder-Center/Community-Calendar community calendar for upcoming meeting dates. For more info. email jmertz@kaleidahealth.org.
Chautauqua County Family & Caregiver Support Group meets the 3rd Tuesday of every month from 12:00 pm-1:00 pm via Zoom due to COVID. Go to www.parentnetworkwny.org events calendar for upcoming meeting dates. For more info. 716-332-4170 or email info@parentnetwork.org.
The Link WNY’s Family & Caregiver Group meets second Monday of the month from 6:30 pm – 8:00 pm via Zoom. Go to www.parentnetworkwny.org events calendar for upcoming meeting dates. For more info. 716-332-4170 or email info@parentnetwork.org.
Online Support Group for Young Adults (18 – 30 years old) with Autism Online support group run by Patty McCalister, LMHC. This group will allow you to make connections with your peers via Zoom sessions (in-person session TBD). A variety of topics will be discussed relevant to group members and guest speakers will be invited to join a few of the groups. Contact: patriciamccalisterlmhc@gmail.com for upcoming dates and times and to sign up or text 716-345-5450.
Neurodiverse Adult Group Created by Autism Services Inc’s former CEO, Veronica Federiconi, to meet the interests of autistic adults ages 18 and up. Monthly gatherings held at the Crane Library, 633 Elmwood Ave. Buffalo, NY, 14222. This monthly gathering is open to anyone in the Western New York/Niagara area. The gathering offers a safe and comfortable environment, where people can meet new friends, learn something new, share experiences, if they choose to do so, or just come to listen. For more information, including meeting dates and times, please email Veronica at: federiconiveronica@gmail.com or call 716-713-2734.
WNY Sibshop at Canisius College Ages 6-12 This program provides support, guidance, and opportunities for peer interactions to siblings of children with special needs. Sibshops are lively, action packed 4-hour workshops that celebrate the many contributions made by brothers and sisters of kids with special needs. Cost per session: $20 to register the first child in the family, additional children $5 each. They also have a library for parents and siblings. www.sibshopwny.com. Contact Dr. Susan Putnam at 716-574-9217 profputnam@gmail.com.
| DDAWNY Family Committee Meeting Time/Location: Meets at 7:00 pm at Aspire of WNY, 7 Community Drive, Cheektowaga NY (Zoom option available). Join our mailing list at www.ddawny.org and RSVP online to be notified of meeting dates. |
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| DDAWNY Family Committee Focus: A support group to inform family members about the rights, protections, services and options available for their loved one with developmental disabilities(DD). Their purpose is to provide individuals with DD a range of choices for their living opportunities and to help family members become effective advocates. | |
| Contact Info: Sign up for email list at www.ddawny.org Check out our Facebook page. DDAWNYFamily Committee Focus: Advocacy and living options for individuals with DD. Email ddawnyfamilycommittee@gmail.com |
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Special Education Groups – various districts
| Local SEPTSA and SEPAC | |
| Meeting Time: Check websites or contact person |
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| SEPTSA (Special Education Parent, Teacher, Student Association) and SEPAC (Special Education Parent Advisory Committee) Groups While not specifically for autism, they are another source of support and a great way to network with other parents in your school district. Call your school district to see if they have a SEPTSA or SEPAC. |
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Contact info:Clarence SEPTSA: www.clarenceschools.org/domain/742 or email ClarenceSEPTSA@gmail.com |
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Olean Area Support Group Meeting Time:
Meets on the 2nd Monday of each month from 6:00 p.m. – 7:30 p.m., excluding July and August.
Light refreshments will be served.Location: Trinity United Methodist Church, 131 N 9th Street, Olean, NY.Provides a welcoming environment for parents and other caregives of children with autism spectrum disorders to meet, share experiences, ask questions and receive support. Moderated by Christie Chesebro, MSEd, Autism Service Coordinator and Parent, The Guidance Center in Bradford, PA and Karen O’Dell, MSEd, BCBA Board Certified Behavior Analyst Autism Services Specialist and Parent, Olean City School District. Contact Info:
All are welcome but reservations are appreciated. Please call Karen: 716-307-9905 If you are interested in attending but have transportation or other barriers that would limit your participation, please let us know.
Starter Resources
- Diagnosis : CHILDREN’S GUILD AUTISM SPECTRUM DISORDER CENTER
Located at Oishei Children’s Outpatient Center 1001 Main Street. During one visit, each child is seen by a developmental pediatrician, child neurologist, and child psychologist. After the visit, the team discusses the child and determines the diagnosis and/or need for any additional testing or services. The Center has a full time social worker and nurse and offers a monthly parent group, newly diagnosed sessions and information resources for parents of children diagnosed with ASD. Contact: (716) 878-7600 - NEW YORK STATE EARLY INTERVENTION PROGRAM
The Early Intervention Program is a statewide program that provides many different types of early intervention services to infants and toddlers with disabilities and their families. - FIRST 100 DAYS
The Autism Speaks 100 Day Kit is created specifically for newly diagnosed families, to make the best possible use of the 100 days following the diagnosis of autism. They also have a 100 day toolkit for Asperger’s and High Functioning Autism. - Diagnosis: LEVINE AUTISM CENTER, GOLISANO CHILDREN’S HOSPITAL
Formerly Kirsch Developmental Services Center provides evaluations for children who are suspected of having an autism spectrum disorder and services after the diagnosis. An Autism Speaks Autism Treatment Network Site that provides specialized treatments for health and behavior challenges associated with ASD. Also provide information and resources to families to help them get the right services or support in their community. Contact: (585) 275-2986 - GUIDE TO UNDERSTANDING SUPPORTS AND SERVICES
Administered by the New York State Office for People with Developmental Disabilities (OPWDD). The Guide was developed to inform families about the wide range of supports and services available to qualified individuals and to assist them in accessing those services for their loved one with a developmental disability. - GLUTEN/CASEIN/SOY FREE DIET TACA provides information, resources, and support to families affected by autism. This website has extensive resources for starting the Gluten-Free Casein-Free Diet.
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DDAWNY 2017 Guide to Services
This guide is intended to assist individuals, family members, community organizations and school district personnel who are seeking services and community supports to meet the needs of people with developmental disabilities. -
Parent to Parent
Parent to Parent of NYS supports and connects families of individuals with special needs. They provide the support and connection through their parent matching program; information and referral; and trainings. -
Parent Network of Western New York
A community resource for families of individuals with special needs and for professionals who work with these families. Parent Network’s goal is to empower families to successfully advocate for their children with special needs and to see that they receive proper care and education by offering seminars, workshops, conferences, information and referral services, and resources. http://parentnetworkwny.org -
New Autism Speaks Sleep Strategies Guide
This informational booklet is designed to provide parents with strategies to improve sleep in their child affected by autism spectrum disorders (ASD) -
Autism Spectrum Disorders Resources
The Autism Spectrum Disorder Center has a collection of ASD resources including info on haircuts, toilet training, Medicaid waiver services and travel resources. -
Continuing Parent’s Health Insurance Coverage for Adults with ASD Adult child with a disability can continue on parent’s health insurance after the age normally terminated. Ask your current health insurance carrier for a form/details on how to document such disability and an inability to achieve “self-sustaining employment”. Must be submitted within 31 days of termination. Read link for details.
Safety Options
- PROJECT LIFESAVER OF WNY Law enforcement based tracking program for children/adults with disabilities and elderly with dementia who are prone to wandering. Now available in Western New York . It has a 100% success rate (with an average search time of less than 30 minutes).
- BIG RED SAFETY TOOLKIT National Autism Association FREE Toolkit for a caregivers of children/adults with ASD who are prone to wandering off from a safe environment, and whose diagnosis may interfere with their ability to recognize danger and/or stay safe.
- FIRST RESPONDER TOOLKIT National Autism Association also provides tools and resources for First Responders to prepare for potential searches for a missing child/adult with ASD.
- HOME AND COMMUNITY-BASED SERVICES WAIVER (OPWDD) OPWDD administers the HCBS Waiver. Waiver provides a variety of services and supports that are tailored to each person’s needs, including habilitation services, respite care, service coordination, and adaptive technologies. Services/staff provided by a variety of not-for-profit agencies or by OPWDD’s Developmental Disabilities Services Office (DDSO) staff.
- ENVIRONMENTAL MODIFICATIONS (E-MODS) Physical adaptations to the home that can increase or maintain the individual’s ability to live at home with independence. E-MODS are NOT limited to, ramps, lifts, hand rails, bathroom modifications (such as roll-in showers). E-Mods can include modifications that address the individual’s sensory deficits, such as Braille identifications systems and strobe light smoke detectors and alarm devices, and modifications that promote a safer environment for individuals with challenging behaviors, including window protection, reinforcement of walls, open-door signal devices and durable wall finishes. To be eligible for E-MODS services through OPWDD, the individual must be enrolled in the Home and Community-Based Services Waiver or the CAH Wavier.
- ASSURANCE WIRELESS Individual with disability can apply for FREE Assurance Wireless phone, 200 FREE minutes of wireless service each month for local and long distance calling within the U.S., and more. You may qualify if you receive state or federal assistance. See website for details.
- MEDICALERT FOUNDATION With a MedicAlert medical ID, emergency responders, police and good Samaritans can quickly identify missing people and connect them with MedicAlert’s 24/7 call center to reunite them with loved ones and make sure they receive the emergency care they need.