Even though it is our next-door neighbor to the North, Illinois is a world apart when it comes to support for its autistic population. One of the reasons for this is TAP – The Autism Program of Illinois, the largest comprehensive statewide provider of autism services in the country. TAP collaboration of 17 agencies operate 19 centers across the state to provide services to children, families, educators, day care providers, and medical professionals.
The Autism Program of Illinois Service Network serves and supports persons with Autism Spectrum Disorder and their families through a coordinated network of providers, parents, and university programs while developing, utilizing, and sharing best and promising practices. As the largest, comprehensive statewide program in the country dedicated to improving the lives of individuals with autism spectrum disorder (ASD) and their families, TAP provides a variety of resources and services. As a collaboration of local agencies, TAP is able to offer services that respond to the unique needs of different communities across Illinois. All TAP Service Network Partners have a variety of resources available to families, caregivers, teachers, and interested community members on autism spectrum disorder (ASD), as well as other developmental concerns, including:
- Family and Community Resource Rooms (FCRRs): Resources range from informational brochures, books, videos, tip sheets, and visual aids in addition to developmentally appropriate and interactive games and toys.
- Screening and Diagnosis: Utilizing ASD-specific and general developmental measures, as well as information collected from parents and teachers, children are screened for the possibility of ASD or other developmental delay. When a screening indicates the need for further evaluation, a comprehensive diagnostic evaluation is warranted. Overseen by a clinical psychologist or physician with specialized experience in developmental disabilities and ASD, the specifics of the evaluation will be based on the needs of each individual child.
- Social Skills Groups: Children with ASD often face challenges in everyday interactions with others. Social skills groups help children learn the social rules we typically take for granted, and develop a greater level of comfort in communicating with others. Groups vary in length, and are typically age- and gender-specific.
- Family Services: Even though only one child in a family may be diagnosed with ASD, the entire family is affected. Trained professionals provide family treatment, consultation, and specialized resources and supports to address these concerns.
- Support Groups: Parents and siblings can often benefit from the reassurance of knowing that others are facing many of the same challenges; hearing of others’ approaches and successes often provides new ideas to consider. Many TAP Service Network Partners host Parent Support Groups and Sibling Support Groups throughout the year, and are aware of different support groups operating in service area. In addition, most Partners offer an educational workshop for parents whose children have been newly diagnosed with an ASD.
- Specialized Consultation: Sometimes you have a specific issue or concern and want professional advice – this is when you can benefit from the opportunity to consult with an experienced professional. TAP partners provide advice, recommendations, and referrals to specialists and other agencies as appropriate. This service is available to parents and caregivers, educators, health care, child care and other providers. Many TAP Partners also provide consultation services in local schools in addition to those services provided in the TAP centers.
- Training Programs: TAP offers a number of training programs through our Partners and the Central Office. Programs are available for parents and caregivers, educators, EI professionals, First Responders, day care providers, and others who work with individuals with ASD.In addition, TAP provides Autism Awareness workshops and events throughout the year (and especially during Autism Awareness Month in April) for community groups and the general public. In many cases, trainings and workshops can be customized for the audience or to fit within a specific timeframe.
- Telehealth Presentations: TAP sponsors an ongoing series of short lectures and workshops on ASD-related issues for Service Network Partners and community professionals. Presenters are experts in their fields, with topics ranging from Differential Diagnosis, Genetic Testing, Clinic/School Teamwork, and others.
While Indiana does offer a variety of services and organizations in support of the autistic community, such as IU’s Indiana Resource Center for Autism, Little Star Center, the Autism Society of Indiana, and Optimal Rhythms / Access Academy. it doesn’t go far enough. These well-meaning groups throughout Indiana work independently and, occasionally, at odds with each other.
According to the article “Increasing Incidence of Autism Spectrum Disorders Continues in Indiana” by Dr. Cathy Pratt, Director of the Indiana Resource Center for Autism:
- In 2008, based on a sample of 8 year olds, the Centers for Disease Control (CDC) reported that the prevalence of autism had risen to 1 in 88 in American children. By 2010, using a similar sample, it was announced that the incidence had climbed to 1 in 68. Based on these latest numbers, 1 in 42 boys and 1 in 189 girls are being diagnosed with an autism spectrum disorder.
- According to December 2010 data, the number of students served under the eligibility category ASD was 11,514. By December 2011, the count was 12,226.
- According to the child count data from December 2012, the number of children served under the diagnostic category of ASD was 13,020; and with the December 2013 data, the number had grown to 13,675.
- This year’s child count data shows an increase from the previous year of 504 for a total of 14,179.
With staggering numbers like that, it seems obvious to us that an “umbrella” organization like TAP can help resolve many of the issues, problems, and roadblocks families currently face when dealing with the bureaucracy involved with attaining education, support and services for Hoosiers with an Autism Spectrum Disorder (ASD).
But it is easy to say that we need it. The question is, what are we going to do about it? The proven template exists, but it will take a concerted effort to bring something like TAP to Indiana; we need someone to lead the effort and start a grassroots campaign. As Sara Wolff, a young woman with Down’s Syndrome, so graciously proved in her fight to have the ABLE Act passed by Congress, one person can make a difference. Could you be that person? Let’s start a conversation and see where it takes us.