Autism Spectrum Disorders | Patient and Family Resources

TKOC understands life with an individual with autism can be uncertain and stressful at times. TKOC also recognizes that the best support for our families often comes from the stories shared by other families in similar situations. We will continue to highlight TKOC families and share their stories here, both successes and challenges, as a way to provide encouragement and inspiration to our families.

• Read Jill's Story

The Kelly O’Leary Center believes the best way to care for our children and adolescents with autism are to make the family part of our health care team. With this belief in mind, the Division of Developmental and Behavioral Pediatrics (DDBP) has established its own Family Advisory Council (FAC) to incorporate the thoughts, perspectives and opinions of families into our clinical practice; truly giving a voice in the decisions of how we provide care for our patients and their families.

The council consists of:

• 24 family members and DDBP staff
• Meets monthly (with the exception of July and August)
• Discusses ways families and professionals can improve the patient and family experience within DDBP.
• For more information regarding the council, or to join as a Family Member, please contact the Family Outreach Associate at 513-636-4611.
• DDBP-FAC Family Member Recruitment is held during the months of October-December

While your child is a patient at Cincinnati Children's, you can visit the Family Resource Center for a place to relax and get assistance with many non-clinical amenities. It is staffed by Concierge Services who can assist you with lodging reservations, tickets to area attractions, sales of safety items, finding local resources, and much more.

Contact the Family Resource Center and Concierge Services at 513-636-5009 or concierge@cchmc.org.

The Special Needs Resource Directory is a comprehensive reference for parents, caregivers and healthcare providers. It was created by the Complex Care Center and supported by the Family Resource Center. Here you can quickly find links to local and national resources to help you:

• Discover information on special healthcare services from infancy through adulthood
• Become an advocate for your child
• Develop community connections and support
• Locate meetings and workshops on our community calendar

Can’t find the information you need? Call for assistance: 513-636-7606 or 800-344-2462 ext.67606

We encourage you to email your suggestions for additions to the Special Needs Directory to specialneeds@cchmc.org.

The Rubinstein Library at Cincinnati Children’s is the place for families to turn for extensive health-related information on developmental and behavioral issues and related children’s health conditions.

We are a free service open to parents, patients, staff, professionals, trainees, students, and the community. Accurate, up-to-date information is available for staff and families in our library with trained staff on-hand to help.

We have a toy library that provides a variety of educational and developmental toys to promote skills such as pre-reading, hand-eye coordination, large and fine motor skills, and social skills. Toys may be selected from several categories such as counting, dramatic play, games, music and puzzles.

For more information, call the Rubinstein Library at 513-636-4626.

Visiting a medical center can be stressful for children. Child Life Specialists at Cincinnati Children’s are committed to the practice of family-centered care by promoting play, education, developmental and psychosocial support. We are an integral part of the health care team who can support you in both your child’s outpatient visit and inpatient stay. Child Life Specialists can minimize stress and maximize coping of patients and families during their health care experience by: 

• Serving as experts in growth and development
• Providing age appropriate education to help explain the health care experience
• Preparing children and their families before and during medical procedures
• Advocating for patients and families and encouraging their involvement during hospitalization
• Providing emotional support for the entire family during drastic life changes

Our commitment is enriched through research and the education of professionals and the community.

DDBP Child Life Specialists are also members of the Adaptive Care Team, which is a program that promotes individualized healthcare for patients with developmental and behavioral challenges.  We work with you to come up with an adaptive care plan to improve your child’s visits.  Since each child is unique, we will create a plan just for your child to reduce distress and increase coping.

Read more about our Child Life program.

Read more about our Adaptive Care Team.

To obtain more information about our Child Life services offered through TKOC, call 513-636-8364.

Training opportunities for families and professionals are presented by The Kelly O'Leary Center for Autism Spectrum Disorders with support from Hamilton County Developmental Disabilities Services (HCDDS).

• The classes are held monthly (with the exception of July and December)
• The classes are at our center (Medical Office Building) at 3430 Burnet Avenue, Cincinnati, OH 45229.
• These classes are for adults only including parents, professionals, and others caring for or working with children and adolescents with ASD.
• For all class information or registration, please contact a Training Coordinator @ 513-636-4611 or TKOCLearn@cchmc.org.
• To get the latest information on classes and other community information download a PDF here and email to Janet Seide at janet.seide@cchmc.org.

Our social workers are a vital part of the interdisciplinary team and provide services to families and children seen for assessment and/or treatment in DDBP. Social workers can help you and your child cope with the practical and emotional concerns that accompany diagnosis and treatment of many developmental and behavioral disorders and problems.

Our services include:

• Information about and referral to community resources for treatment and support
• Groups for families and professionals about available resources
• Psychosocial assessment to address family functioning and identify strengths, concerns, needs, and coping skills to assist in treatment planning
• Supportive counseling to families in adjusting to and learning about their child's diagnosis or disability
• Assistance with emergency resource needs such as clothing, food, shelter and transportation
• Discussion of schools concerns and individual education plans (IEP)
• Help with grief, loss and bereavement issues
• Intervention in crisis situations and support for families
• Counseling for families facing social and financial difficulties
• Assessment and intervention when children present signs of or concerns about abuse and neglect
• Review of alternative services for parents who have difficulty keeping appointments

To obtain more information about our Social Services supports at TKOC, please contact a Social Worker at 513-636-4611.

Join Special Connections, an online support community at Cincinnati Children’s. Connect with others who have children with special healthcare needs to share experiences dealing with everyday challenges.

Find Special Connections at cincinnatichildrens.inspire.com.

Autism Speaks is the world’s leading autism science and advocacy organization. It is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Mr. Wright is the former vice chairman of General Electric and chief executive officer of NBC and NBC Universal. Since its inception, Autism Speaks has committed nearly $200 million to research and developing innovative resources for families. Each year Walk Now for Autism Speaks events are held in more than 100 cities across North America. On the global front, Autism Speaks has established partnerships in more than 40 countries on five continents to foster international research, services and awareness.

To learn more about Autism Speaks, please visit AutismSpeaks.org.

Regional Autism Advisory Council of Southwest Ohio (RAAC) is comprised of agencies, entities, professionals, and parents who care for and about individuals with Autism Spectrum Disorder (ASD). Members come from the counties of Hamilton, Butler, Clermont, and Warren in Ohio. The group began meeting in 1999. Hamilton County Developmental Disabilities Services (HCDDS) is a founding member of RAAC.

RAAC’s mission is to provide strategic leadership within our community in building a full array of best practice services to support individuals with autism and their families. The Regional Autism Advisory Council does this through developing and maintaining partnerships, task force facilitation, linking local, state, and national resources, as well as autism training and education.

For more information, contact Anne Tapia, RAAC Coordinator at 513-636-7616 or anne.tapia@cchmc.org.

The Ohio Department of Developmental Disabilities (DODD) is responsible for overseeing a statewide system of supports and services for people with developmental disabilities and their families. Each county in Ohio has an agency for services and supports. For more information and to check eligibility, please contact http://dodd.ohio.gov/Pages/default.aspx.

Kentucky and Indiana also have their own system of services and supports, for information about what services, supports and eligibility are available in each of those states, please contact a TKOC Social Worker at  513-636-4611.

The Autism Society Greater Cincinnati, the first organization within the region, is dedicated to improving the quality of life for those with autism and their families. They offer knowledge, information & resource services, family support, education programs, and community projects and events to increase autism awareness. They increasingly seek partnerships to build a better community for those touched by autism through active participation and collaboration with local, state and national autism organizations, advocates and leaders.

For more information contact: Info & Referral Specialist at 513-561-2300 or info@autismcincy.org. www.autismcincy.org.

Ohio Center for Autism and Low Incidence (OCALI) serves families, educators, and professionals working with students with autism and low-incidence disabilities, including autism spectrum disorders, multiple disabilities, orthopedic impairments, other health impairments, and traumatic brain injuries. The center offers training, technical assistance, and consultation to build professional and program capacity to foster individual learning and growth.

OCALI's mission is to build state- and system-wide capacity to improve their outcomes through leadership, training and professional development, technical assistance, collaboration, and technology.

For more information, visit their website at www.ocali.org or call 866.886.2254 Toll Free (866. 88 OCALI).

Families with ASD was founded in 2005 by a Cincinnati, Ohio couple, Gregory and Julia Ann Smith, who wanted to reach out to other families who understood what is was like to have a family member with autism.

Families with ASD offers support groups, socials, group outings, and holiday parties for the whole family. All of their events are free of charge.

Families with ASD is also committed to sharing information and resources with others. The Autism Family Resource Center located in Milford, Ohio was set up for the purpose of disseminating information regarding available autism resources. The Autism Yellow pages ©, was created by Families with ASD and is distributed free of charge at their annual Autism Expo, that in 2014 was expanded to include all special needs and medical diagnosis.

For more information contact: familieswithasd@yahoo.com or Families with ASD’s Autism Resource Center 513-444-4979. www.familieswithasd.org.