What do I do now that my child has been diagnosed with autism or you suspect your child may be diagnosed with autism?

If your child is under the age of three:

A pediatrician may the first person to notice that you child may have a high risk of delay or a suspected delay in development.  Following your pediatrician raising concerns or noticing suspected red-flags, contact the Monroe County Early Intervention system for a core evaluation at 585-753-5437.

An initial service coordinator from Monroe County will be assigned to work with your family once you have contacted Early Intervention. This initial service coordinator will come out to your house to meet you and your child, at which time they will also give you information about setting up a core evaluation for your child.A core evaluation includes assessment from a special educator, speech-language pathologist, and possibly other related services (i.e. psychologist, occupational therapist, physical therapist). This assessment can take place in your house or wherever is most comfortable for your family.

Following the core evaluation, if your child is eligible to receive services, (e.g. speech, special education, occupational therapy, physical therapy, etc.), an Individualized Family Service Plan (IFSP) meeting will be set up by your initial service coordinator and you will be assigned an on-going service coordinator.At the IFSP meeting, the team members (e.g. parents, on-going service coordinator, evaluators) will decide on what type of services are appropriate for your child, how many hours per week your child will get services, and who will provide the services.

A developmental evaluation may at some point in this process be recommended by your pediatrician, service coordinators, or service providers. A referral from your pediatrician is required, and developmental evaluations may be requested through The Kirch Developmental Services Center at University of Rochester Medical Center.

If your child is three years of age or older:

Your pediatrician may notice red flags as your child grows, and concerns may not be apparent until your child further develops.  If your child is over the age of three years when you/your doctor become concerned that your child may have autism, you should then request a referral to The Kirch Developmental Services Center at University of Rochester Medical Center to have a developmental evaluation completed.

If your child is over the age of three, contact your school district with your concerns regarding your child's development.

Your district may approve a core evaluation to be completed by the agency of your choice, which includes assessment from a special educator, speech-language pathologist, and psychologist, as well as possible other related services (i.e. occupational therapist, physical therapist, etc.).  Similar to the EI evaluation, this assessment can take place in your house or wherever is most comfortable for your family.

Following your core evaluation, your school district will hold a Committee on Preschool Special Education(CPSE) meeting to discuss the results of the testing, as well as to determine whether your child is eligible to receive therapy/educational services.  If your child is eligible to receive services based on delays across various areas (e.g. cognitive, communication, motor, adaptive, social-emotional) your district chairperson, the CPSE committee, the evaluator representative, and the parent/caregiver will work together at the meeting to determine what type of services are appropriate, the frequency of services, and the location of where the services will occur.

What services does my child need?

No one child has the same strengths and needs; therefore, therapy services are decided on an individual basis for every child. Service types that are typically offered to children on the autism spectrum may include: special education, speech therapy, occupational therapy, physical therapy, music therapy, teacher assistant services, social work, and psychology. The specific services that your child receives will be based on their needs while working with your service coordinator or CPSE chairperson.

Who determines what services my child can receive?

ABA is a behaviorally based therapy model that relies on discrete trial teaching (DTT) to teach new concepts. This allows for high repetition of practice which has been shown in research to increase acquisition of skills in children with autism. Reinforcement specific to each child is used to modify behaviors; increasing positive behaviors and decreasing non-functional or socially inappropriate behaviors. Play skills including closed-ended toys (ie. Puzzles, shape sorters, etc.), turn taking, pretend play, and cooperative play with peers in taught in a structured environment with support from the therapist to increase functional play skills.

Who will provide needed services?

Services will be provided by an agency of your choosing.

Where are services for my child provided?

Many agencies provide agency based as well as home based services. You along with your service coordinator or CPSE will determine where services would be most beneficial to your child. Services could be delivered in your home, at a daycare center, or at the agency's site.

Are there support group for siblings?

Pieters Family Life Center
1025 Commons Way,
Rochester, NY 14623
Phone: (585) 487-3502

A free sibling workshop and support circle for children who have brothers and sisters with special needs. These siblings meet at the Pieters Family Life Center once a month and hang out with other children who know what it's like to have a family member with special needs. Participants can unwind through recreational and educational activities, as well as have opportunities to express themselves through a wide variety of activities unique to the Life Center

What is a Medicaid waiver?

Medicaid waivers are waivers provided by most states to persons with developmental disabilities or long-term illnesses to receive certain medical and non-medical services. These services may help an individual at any age remain living at home or within their community instead of an institution or residential placement.

Medicaid will count family income and resources in determining eligibility. However, a person with a disability under age 21 may qualify regardless of parental income and resources for what is known as a "waiver."

Family members and friends may be providers of waiver services if they meet the necessary provider qualifications. Generally, spouses and parents of minor children cannot become paid providers of waiver services.

Medicaid Waiver Services include:

  • Adaptive Technology
  • Environmental Modifications
  • Respite Care
  • Day and Residential Habilitation and Prevocational Services
  • Supported Employment
  • Family Education
  • Plan of care of support services
  • Consolidated Support Services
  • Live-in Companion


What is respite?

Respite services are provided in the home setting. Respite services are available to parents and other caregivers, giving them a much needed break from the daily care and supervision of individuals with disabilities or special needs.

Where else can I turn to?

We have compiled a list of  Community Resources, businesses, and organizations and that offer support and services for children with Autism Spectrum Disorders.  Start with the link below and check out the rest of this website.

More information