Autism Services: A Need for One in Five Hundred

Do you know children who have delayed language, like to spend time alone, have little interest in friends, and show unusual reactions to sensory experiences? These children, who often have unique behavioral characteristics, may have the complex developmental disorder called autism. This neurological disorder affects the functioning of the brain and impacts decision making, use of language and social behaviors. It may impact their independence, work options as adults, and living needs as they continue to learn throughout their lifetime. They can show good improvement with many of the behaviors difficult to notice, if appropriate services and understanding surround them. The Regional Autism Services Program is one such resource for services and technical assistance for children with autism and their families.

This statewide Regional Autism Services Program celebrated its tenth year with Child Health Specialty Clinic and its collaborative Department of Education. There have been many changes and the beginning of new understandings during this past decade in the field of autism that impact other disorders in the autism spectrum like Pervasive Developmental Disorder or Asperger’s Disorder. The Autism Program has recently reviewed it services that include: 1) community based screening services through Child Health Specialty Clinic for children 2 years and above 2) team-oriented interventions from educational and support teams through the Area Education Agencies called Autism Resource Teams 3)interagency cooperation that facilitates statewide and regional training to meet the needs of this population and 4) resource dissemination and technical assistance.

The list below articulates the amount of service delivered by this program in one year (1999-2000) and reflects on activities of the current year. This program is staffed by one autism consultant, Sue Baker, and a half time secretary (319-356-4619).

• 725 telephone calls, e-mails for resource and referral services

Fifty two percent were requests from community providers (especially parents, local schools, and AEA personnel) for autism specific         library-type     resource information. The different lending library holdings are described in a web site: http://www.medicine.uiowa.edu/autismservices/ and include: Interactive Children’s Literature books, toy units, sensory kits, topical books, and video and audio tape library. The UPS charges for distribution (one-way) to customers averaged $72/month. We are pleased that customers can take advantage of our free lending library though they must accept the costs of sending materials back through a tracking system, such as UPS.

Forty eight percent were requests for resource and referral information regarding experienced diagnostic and medical services at the local, state, or national level (13%); biomedical testing, resources, and services (13%); local community service providers (19%) and special product requests.

The data from the fiscal year 2001 look to be above that 725 number, likely due to the access to e-mail. The requests appear to be for resource and referral information, but twice that number are desiring technical assistance in autism programming. .

• Nineteen youngsters have been provided screenings in Child Health Specialty Clinics (for children over the age of three suspected to have autism).
  
  Recommendations for educational follow-up with the local AEA Autism Resource Teams and diagnostic medical confirmation resources for those who screen positive have been provided. Less than a dozen screenings were completed on children suspected to be at risk for autism below the age of three years.
  
  It has not been confirmed that those with positive screenings (above or below the age of three) are indeed receiving specialized behavioral strategies or appropriate curriculum modifications due to their learning needs. It has also not been confirmed that these new parents have been networked with additional resources (Autism Society of Iowa, community agencies, etc.) to meet their needs. This is an area for improved communication and sharing.

The numbers screened below the age of three increased this past year but was still below a dozen youngsters. The screening of those over the age of three in the recent year increased to 24. This is still below what would be expected despite training offered to the nursing staff regarding early symptoms to listen for during referrals or ask about during other developmental evaluations. Statewide training for family practice pediatricians, Nurse Practitioners, Pediatrics staff and Physician.Assistant’s will be a targeted activity as it is needed to improve services and identification of this population early, if funding is accepted through grant monies.

• Fourteen community training/technical assistance activities to plan high level interventions for children with autism in the schools or home were provided on especially complex cases. This number of activities to assist Autism Resource Teams and local building teams rose to eighteen last year, despite the request for reimbursement of travel or ICN transmission fees.

The outcome data from the local school team, AEA staff, Autism Resource Team, and parents have shown this to be a helpful implementation model. It sometimes takes face to face interactions to address some of the special language, social, behavioral, or motivational strategies read from book or presentations down to an implementation level. Feedback responding to these programming concerns initiated by staff and parents have been positive.

• Thirteen statewide and regional trainings on autism-related topics have been presented to over 800 parents, educators, and health professionals. The number of presentations provided to groups for last year was eleven.

Two ICN Topics in Autism presentations occur yearly as well as many agency, organizations, colleges, and AEA presentations are requested. These free presentations address various topics of interest in raising and educating students with autism spectrum disorders. Our two topics for this year will be on feeding and eating issues for young children and using functional analysis to address behavioral concerns.

• On-going Autism Resource Team support; Parent Support
  

Area Education Agency’s Autism Resource Teams (16 teams across the state include 185 multi-disciplinary staff including parent representatives) also take part in training activities for new members, team updates on strategies, and various types of implementation trainings to keep skills, knowledge, and resources updated

• Special projects are available for parents. This office piloted a free child pager system with 50 families who worked with this device and found it overall not consistently sensitive to the distance ranges and could not be relied upon with confidence. Parents can apply through our web site for a photographic and experience story kit to help us gather data about using pictures and print in teaching youngsters at home.

• Numerous activities have been initiated through the Iowa Department of Education, Bureau of Children, Family, and Community Services.
  
  These include participating as a Special Education Liaison to an AEA, team member for school accreditation and school improvement visits statewide, staff development activities to improve leadership skills, use of data to improve outcomes, and consultation skills. The Department provides connections with other discipline groups (Early Childhood and Transition for example) who provide federal grant funded activities for cooperative initiatives in autism each year.