Talking with Parents about Autism Spectrum Disorders

Feel free to print and/or copy any original materials contained in this packet. KITS has purchased the right to reproduce any copyrighted material included in this packet. Any additional duplication should adhere to appropriate copyright law.

The example organizations, people, places, and events depicted herein are fictitious. No association with any real organization, person, places, or events is intended or should be inferred.

• The PowerPoint presentation initially was developed to be used by professional development trainers working with early intervention/Part C and early childhood special education/Part B/619 service providers. We believe the PowerPoint can also guide individuals or teams in learning, role-playing, and implementing these practices on their own. Each of the materials referred to in the PowerPoint are included in the Resources section of the packet. To receive a copy, please email kskits@ku.edu and write 'Requesting TA packet, Birth to Five, Talking with Parents about Autism, All Resources zip file.'
• This technical assistance packet was developed to support and extend the Talking to Parents Action Kit developed by Autism Speaks. 

A unique feature of this packet is the Implementation Checklist. It is our hope that this tool will assist you, your team, or your program in monitoring your progress as you work to improve your competence and confidence in talking with parents about autism spectrum disorders.

_{Compiled by Phoebe Rinkel, M.S.,}

_{Sarah Hoffmeier, M.S.W.,}

_{Lori Beth Chambers, M.S., CCC, SLP}

_{David P. Lindeman, Ph.D.}

_{October 2009}

_{Kansas Inservice Training System}

_{Kansas University Center on Developmental Disabilities}

_{Adapted for accessibility and transferred to new website October 2022}

_{Kansas Inservice Training System is supported though Part C, IDEA Funds from the Kansas Department of Health and Environment.}

_{The University of Kansas is and Equal Opportunity/Affirmative Action Employer and does not discriminate in its programs and activities. Federal and state legislation prohibits discrimination on the basis of race, religion, color, national origin, ancestry, sex, age, disability, and veteran status. In addition, University policies prohibit discrimination on the basis of sexual orientation, marital status, and parental status.}

Table of Contents

Letter from the Director

Appropriate Screening and Diagnostic Tools for Young Children

Resources to Support the PowerPoint Presentation

Web-based Resources on Autism Spectrum Disorders For Families of Young Children   

Worksheet for Identifying and Describing Local Resources

Implementation Checklist

Additional Resources

Packet Evaluation

Letter from the Director

October 2009

Dear Colleague,

It is estimated that an average of 1 in 110 children in the United States is diagnosed with an autism spectrum disorder (ASD) by the age of eight (CDC, 2009). Although the median age of diagnosis is between 3.5 and 5.0 years, for most children with an ASD, developmental concerns had been noted before the age of 3 (CDC, 2009). ASD is a complex disorder that can sometimes involve other health, developmental, neurological, and genetic conditions. Additionally, support for early identification of ASD comes from a growing body of evidence suggesting improved outcomes for most and dramatic response to intervention for some children with characteristics of autism. Finally, there are some resources and services that are only available to children diagnosed with an autism spectrum disorder. This information provides a strong rationale for early intervention professionals to know how and when to share concerns with parents when possible “red flags” for an autism spectrum disorder are recognized.

Moreover, talking with parents about your concerns demonstrates your knowledge of ASD, which will make it more likely that parents will turn to you for guidance and support in the future. Your open communication with parents at this critical time can be the first step toward building a relationship of mutual trust and respect.

This packet is intended to provide you with information and resources to guide you in carrying out this critically important responsibility in an effective and sensitive manner.  The information contained in this packet is intended to compliment the Talking to Parents About Autism Action Kit developed by Autism Speaks.

The Autism Speaks training materials primarily target childcare providers and early childhood teachers in community settings. This packet with its supporting materials is intended for practitioners in early intervention (Part C) and early childhood special education (Part B/619) programs. Parents need to know that early intervention and early childhood special education services are always individualized for a child and provided according to need and not prescribed by diagnosis. This is consistent with federal law and state statutes governing Part C and Part B/619 services.

Parents also need to know that they made the right decision when they decided to trust you to evaluate their child. They need to know if your team sees possible signs of an ASD. They need your help in making fully informed decisions about next steps for their child and family.  We hope that your advance knowledge and planning, using information and resources provided in this packet, will increase the likelihood of a positive outcome to this important conversation with family members.

We hope that you will find that the packet contains helpful information. After you have examined the packet, please complete the evaluation found at the end of this packet. Thank you for your interest and your efforts toward the development of quality services and programs for young children and their families.

Sincerely,

David P. Lindeman, Ph.D.

KITS Director

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Appropriate Screening and Diagnostic Tools for Young Children (Birth to Age Five) with Autism Spectrum Disorders (ASDs)

Screening tools listed below are among the most widely used instruments for identifying infants, toddlers, and preschoolers who may be exhibiting characteristics consistent with an autism spectrum disorder and should be referred for a comprehensive evaluation.  Many other screening tools can be effective in identifying behaviors potentially associated with ASDs when administered by qualified examiners with input from family members and other caregivers or preschool teachers (see selected resources).

*Ages and Stages Questionnaires ASQ-3, Third Edition (2009) Bricker, Squires, Mounts, Potter, Nickel, & Raffell Paul Brookes Publishing Co.  Ages:  4-60 months

*Ages and Stages Questionnaire-Social Emotional (ASQ-SE) (2002) Squires, Bricker, & Twombly Paul Brookes Publishing Co.  Ages:  6-60 months

Autism Diagnostic Interview – Revised ADI-R (1994) Lord, C., Ritter, M,. & LeCourteur, A. Western Psychological Services. Ages:  12 months and older

Autism Diagnostic Observation Schedule-Revised ADOS-R (1999) Lord, C., Ritter, M., Di Lavorre, P., & Risi, S. Western Psychological Services. Ages:  12 months and older

*Autism Screening Instrument for Educational Planning Second Edition (ASIEP-2) Autism Behavior Checklist ABC (1993) Krug, D., Arick, J. & Almond, P.  Pro-Ed Publishers Ages: 18 months to adults

*The Brief Infant-Toddler Social & Emotional Assessment BITSEA (2005) Briggs-Gowan, M. & Carter, A. Pearson Education, Inc. 12 to 36 months

*Childhood Autism Rating Scale (CARS) (1988) Schopler, E., Reichler, R., & Renner, B.  American Guidance Service Ages:  2 years and older

*Gilliam Autism Rating Scale:  Second Edition GARS-2 (2006)  James Gilliam Pro-Ed Publishers 3 to 22 years

Johnson, C.P., & Myers, S.M. and the Council on Children with Disabilities (2007) Identification and evaluation of children with autism spectrum disorders.  Pediatrics, 120:5, 1183-1215.  AAP Policy paper also published online

*Screening Tool for Autism in Toddlers and Young Children (STAT) (2009) Stone & Ousley Vanderbilt Kennedy Center  Ages:  24-36 months

Social Communication Questionnaire SCQ (formerly Autism Screening Questionnaire ASQ)  (1999) Rutter, Bailey, & Lord  Western Psychological Services Ages:  4 to adult

*Social Responsiveness Scale (SRS) (2005) Constantino, & Gruber) Western Psychological Services Ages:  4 to 18

*Temperment and Atypical Behavior Scale TABS Screener (1999) Bagnato, Neisworth, Salvia, & Hunt  Paul H. Brookes Publishing  11-71 months

*These items are available from:

KITS Early Childhood Resource Center
2601 Gabriel, Parsons, KS 67357
Email: resourcecenter@ku.edu
Phone: 620-421-3067

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Resources to Support the PowerPoint Presentation

• To receive digital copies of the PowerPoint, please email kskits@ku.edu and write 'Requesting TA packet, Birth to Five, Talking with Parents about Autism, All Resources zip file.'

Rationale

Autism Spectrum Disorder (ASD) is a complex disorder that can sometimes involve other health, developmental, neurological, and genetic conditions. This is reason enough for you to share your concerns with parents when you see possible “red flags” for an autism spectrum disorder. Additional support for early identification of ASD comes from a growing body of evidence suggesting improved outcomes for most and dramatic response to intervention for some children with characteristics of autism. A third rationale for talking with parents about your concerns is that it demonstrates your knowledge of ASD, which will make it more likely parents will turn to you for guidance and support in the future. Finally, there are some resources and services that are only available to children diagnosed with an autism spectrum disorder. Your open communication with parents at this critical time can be the first step toward building a relationship of mutual trust and respect. This document is intended to provide you with information and resources to guide you in carrying out this critically important responsibility in an effective and sensitive manner.

Where to Begin

Supportive information can be found at: 

Autism Speaks

CDC - Act Early

First Words Project

What Families Really Need to Know and Why

The Autism Speaks training materials primarily target childcare providers and early childhood teachers in community settings. This flyer with its supporting materials is intended for practitioners in early intervention (Part C) and early childhood special education (Part B/619) programs that observe “red flags” for a possible autism spectrum disorder during the course of an evaluation. Evaluation and eligibility determination for Part C or Part B/619 services for this child will proceed as it would for any other. As with any child, you will be identifying and describing the strengths and needs of the child with characteristics of ASD. Parents need to know that early intervention and early childhood special education services are always individualized for a child and provided according to eligibility and need, not prescribed by diagnosis. This is consistent with federal law and state statutes governing Part C and Part B/619 services. Parents also need to know that they made the right decision when they decided to trust you to evaluate their child. They need to know if your team sees possible signs of an ASD. They need your help in making fully informed decisions about next steps for their child and family.

Be Prepared

You should provide parents with a list of resources: national, state and local. You should have additional resources available to share with families, depending on the level of information they might need.   Here are sample sources of information for families: 

Parent Center Hub

NIMH - Autism Spectrum Disorder

UW Autism Center

Practice

Your message to families could include these key “talking points”:

1. Some of the characteristics described in their child’s initial evaluation are consistent with characteristics of children with an autism spectrum disorder.   It’s your responsibility to make families aware of your team’s concerns. Find out if they see what you see.
2. You have information on ASDs to share, now or later, as they choose. Find out what they already know about ASDs.
3. Some children with ASDs are more likely to have certain medical problems. A medical doctor can rule out ASD along with any associated conditions. For example, according to the NIMH website above, children with ASD need a formal audiological evaluation (to rule out hearing loss). Some may need lead screening (for children who put things in their mouths), genetic testing (to rule out conditions such as Fragile X Syndrome), laboratory tests (for metabolic problems), or a neurological evaluation (1 in 4 may have a form of seizures).
4. If the family wants to pursue a medical consultation, offer to share the results of your team’s evaluation. Be willing to speak with their child’s pediatrician or family physician. If the family wants a referral for a specialist, be sure you have information regarding developmental pediatricians and specialty clinics in your area of the state. If the family wants to pursue a medical consultation but does not have the resources, you will help them find the support they need (remember, any of these activities requires a signed consent for release of information).
5. There are some resources and services in addition to those offered by Part C or Part B/619 programs that are only available to children diagnosed with an autism spectrum disorder, such as the Kansas Autism Waiver program.
6. The best outcomes for children with ASDs are associated with early and intensive intervention to address medical, educational, and behavioral concerns.
7. Their child is eligible for services from their local Part C or Part B/619 program based on identified need, regardless of diagnosis. If eligible, an effective IFSP or IEP can be developed without delay.
8. Set a date to follow up on referrals and any requests for additional information or assistance.

Final Thoughts on Practice

Sharing sensitive news with parents is never easy, but planning ahead helps.  Role-play with a co-worker or friend (preferably one who is also a parent). If you are a Part C or Part B/619 provider who needs more information or support on this topic you can contact: Kansas Inservice Training System (KITS) email kskits@ku.edu 

Following is a “Talking Points” that you might wish copy the text and print separately to leave with parents.

_{Kansas Inservice Training System & Kansas Instructional Support Network. (2009, April). Talking with parents about autism spectrum disorders: A guide for professionals in early intervention and early childhood special education. Parsons, KS: University of Kansas Life Span Institute at Parsons.}

Talking With Parents About Autism Spectrum Disorders:  Professional “Talking Points”

• Early intervention/early childhood special education services are individualized for every child and provided according to eligibility and need, not prescribed by diagnosis. Your child is eligible for early intervention/special education services through the IFSP/IEP developed by your child’s team (including you). Your child’s individualized program plan will build on his or her strengths to address the needs we have identified together.
• Some of the characteristics observed in your child’s initial evaluation are characteristics we see in young children with an autism spectrum disorder (ASD).  Autism used to be considered a rare disorder. Now it’s not. As many as 1 child in 150 can be considered to have an autism spectrum disorder, with characteristics and symptoms ranging from very mild to severe. Only a medical doctor or licensed psychologist or psychiatrist can diagnose or rule out autism spectrum disorders.
• Some children with ASDs are more likely to have certain medical problems. A medical doctor can rule out ASD along with any associated conditions. For example, children with ASD need an audiological evaluation (to rule out hearing loss). Some will need:
  • lead screening (primarily for children who put things in their mouths)
  • genetic testing (to rule out other conditions with symptoms of ASD)
  • other laboratory tests (to rule out possible metabolic or immune system problems)
  • a neurological evaluation (to rule out possible seizure activity).
• If you like, your early intervention/early childhood special education program will help you talk with your child’s physician and share the results of their evaluation.  However, they can only share confidential information about your child or family with your signed consent.
• If you do not have the resources to pursue a medical evaluation for your child, and you wish to do so, your early intervention/early childhood special education program will assist you in obtaining the support you need.
• There are some resources and services in addition to those offered by your child’s early intervention/early childhood special education program that are only available to children diagnosed with an autism spectrum disorder, such as the new Kansas autism waiver program.
• The best outcomes for children with ASDs are associated with early and intensive intervention to address medical, educational, and behavioral concerns.  
• Review the resources you received from your child’s team. Talk with your spouse and others you trust.  Make a list of your questions or concerns. Then schedule a time to meet again with a representative of your child’s early intervention or early childhood special education team to discuss your questions or concerns and what you want to happen next.

_{Kansas Inservice Training System & Kansas Instructional Support Network. (2009, January). Talking with parents about autism spectrum disorders: Professional “talking points”. Parsons, KS: University of Kansas Life Span Institute at Parsons.}

Talking with Parents about Autism

• Talk over what you plan to say with a co-worker:
  • Put yourself in the parent’s place.
  • Talk over potential questions.
• Set the stage for a successful conversation:
  • Talk in a comfortable, private place.
  • Avoid talking in crowded hallways or over the phone.
  • Sit close to the parent in order to best attend to emotional cues.
• Allow plenty of time:
  • For asking questions.
  • For expressing emotions.
• Be prepared:
  • To explain your observations with facts.
  • To give the parent written information and trusted internet resources.
• Start the conversation with the parent’s observations and concerns:
  • Explore what the family already knows about autism.
  • Ask how they feel about their own child’s development.
  • LISTEN, LISTEN, LISTEN to the parent.
• State your observations:
  • Get to the point quickly.
  • Share observations in a neutral manner.
  • Be sincere and caring.
  • No jargon.
• Don’t leave the parent’s side without a plan:
  • Even if the plan is to do nothing.
  • Make sure the plan is clear to all involved.

Stressful Myths and Autism

• Myth - Autism is caused by immunization of vulnerable children.
  • Reality - Children not immunized with rubella, measles, mumps, hemophilic influenza, pneumococcal, and pertussis vaccines have high rates of developmental disabilities, including deafness, blindness, cerebral palsy, epilepsy, and autistic spectrum disorders.
• Myth - Autism is a mental illness.
  • Reality - Autism is a developmental disability impacting on understanding and use of language, complex learning, and social communication.
• Myth - Autism is caused by problems during labor and delivery.
  • Reality - Prematurity and neonatal complications have not been scientifically linked to autism. Major known etiologies associated with autism include phenylketonuria, tuberous sclerosis, congenital rubella, fragile X syndrome, chromosomal disorders, and severe retinopathy of prematurity.
• Myth - Children with autism cannot learn.
  • Reality - Children with autism have strengths in motor skills, fine motor manipulative skills, nonverbal intelligence, and basic adaptive skills. There is a range of communicative, cognitive, and complex adaptive abilities. All children with autism learn.
• Myth - Autism is caused by poor parenting.
  • Reality - Autism is a neurobiological disorder whereby brain systems integrating language, complex learning, and social communication are underdeveloped.
• Myth - Experimental alternative medical treatments involving specialized diets, megavitamins, and natural therapies can cure autism.
  • Reality - Autism is not caused by food, allergies, or malabsorption. The best treatments for autism are special education programs that build on a child’s strengths, provide family supports, and comprehensively address communicative, learning, and behavior challenges. Children with autism with gastrointestinal concerns should receive competent pediatric care.
• Myth - There is no role for pediatric medicine for children with autism.
  • Reality - All children require a medical home that monitors growth and development, identifies sensory, neurological, and health concerns that can interfere with progress, helps set comprehensive goals that optimize adaptive functioning, and advocates for proactive community programs that provide quality family supports. 

_{Gray, L.A., Msall, E.R., & Msall, M.E. (2008)  Communicating about autism: Decreasing fears and stresses through parent-professional partnerships.  Infants and Young Children, 21(4), 258.}

Early Intervention Services Role-Play Scenario

Dante’s parents, Rashida and Tyrone, were referred to Parents As Teachers (PAT) by their pediatrician shortly after Dante’s first birthday. Dante, their first child, was an irritable baby who had difficulty sleeping most of his first year of life. By 18 months, parents and parent educator were beginning to be concerned about Dante’s lack of babbling, fleeting eye contact, and inconsistent responses to social initiations (i.e., not responding to his name, or looking up when someone came into the room). Results of the routine ASQ and ASQ-SE administered by the parent educator at 24 months suggested a considerable discrepancy between Dante’s personal-social and communication skills in comparison with his motor and problem-solving skills.  Parents indicated a number of concerns, especially on the ASQ-SE.

Results of the PAT screening were shared with Dante’s pediatrician at his 2-year checkup. The M.D. suggested that Dante might benefit from being around other children more, and advised Rashida and Tyrone that developmental milestones can vary widely among young children. Still, the M.D. was unable to get a hearing screening in the office, so he suggested parents contact their local infant-toddler network to request an evaluation, just for reassurance.

Members of your early intervention team have completed an initial evaluation that confirms while Dante’s audiological evaluation was within normal limits, he is significantly delayed in social-communication and adaptive behavior compared to other 2-year-olds. He is eligible for early intervention services through development of an IFSP. In addition, your team has identified multiple “red flags” consistent with what you know about autism spectrum disorders. You have reviewed the outcome of the evaluation with the parents. Now you need to make them aware of the possible significance of your team’s findings with regard to the need to rule out an autism spectrum disorder.

ECSE Services Role-Play Scenario

Scott is a 4 year-old who had been kicked out of 2 community childcare settings and was about to be asked to leave his current family daycare home when his parents brought him to your district developmental screening clinic. “What are we doing wrong?” they asked.  “He’s so smart, and so good when he’s at home, by himself. Then he gets around other children and goes ballistic! At first we blamed the daycare, but now we’re really worried it’s us, and maybe we give in to him too much at home. Or maybe he’s spoiled by being the only child…”

Scott’s DIAL-3 screening was essentially within normal limits except for the need for frequent redirection and some “quirky” behaviors noted by the examiner. A follow-up observation in the family childcare setting confirmed that Scott was exhibiting some serious ‘out-of-bounds” behaviors there. With parent consent, an evaluation was initiated, including a functional assessment of behavior in the childcare setting, along with repeated observations of Scott during daily activities and routines at home and in childcare. The evaluation also included a standardized communication test conducted by the speech-language pathologist, and a curriculum based assessment completed by the team, including the childcare provider and parents. You have finished going over the results of the evaluation with parents prior to the upcoming IEP meeting. You have confirmed Scott’s many strengths in cognition, visual-motor construction tasks, expressive vocabulary, and self-help skills. You have described the problem behaviors noted in his childcare setting, as well as his promising response to the positive behavior supports that have been put into place. The team will be recommending an IEP that includes a positive behavior support plan, at the same time establishing goals for developing “replacement skills/behaviors” in social communication and social interaction with peers. You are also recommending a goal to address a significant delay in prewriting skills. Parents are in agreement with the strengths and needs you have described, and want to know what you think is going on with Scott. They ask if you think he will outgrow his quirky behaviors.

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Web-based Resources on Autism Spectrum Disorders For Families of Young Children

American Academy of Pediatrics Resources for families and professionals on children’s developmental disorders, including autism spectrum disorders.  Includes AAP Practice Guidelines on Identification and Evaluation of Children with ASD and Management of Children with ASD. 

Association for Behavior Analysis (ABA) International The professional organization of behavior analysts. Behavior analysis is the scientific study of behavior. This is the portal to access the special interest group for autism. 

Autism Speaks Dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism and to raising public awareness about autism and its effects on individuals, families, and society. Includes First 100 Days Kit, Autism Video Glossary, Family Services Resource Guide.

Autism Society of America “The voice of the autism community” for individuals with autism, parents, family members or friends, professionals or other interested advocates. Services include annual conference, publications, research support, advocacy, and local chapters across the nation. Also Autism 101: A free online course introduction to autism spectrum disorder.

Beach Center of the University of Kansas has launched a Community of Practice to share evidence, values, and wisdom among families, practitioners, researchers, and policy makers about supports for families of young children with disabilities (including parent-to-parent supports).

Centers for Disease Control and Prevention Autism Information Center. Read about autism spectrum disorders, as well as CDC research projects at the federal, state, and local levels. Find the most current information regarding the prevalence of autism or the association between vaccines and autism. Also interactive tools for parents on detection and community awareness materials (Know the Signs/Act Early campaign).

Center on the Social and Emotional Foundations for Early Learning Develops and disseminates evidence-based, user-friendly information to help early childhood educators meet the needs of the growing number of children with challenging behaviors and mental health problems in child care and Head Start programs. Practical resources for classroom settings and staff development training modules (some in Spanish)

Early Childhood Technical Assistance Center (ECTA) web page on autism spectrum disorders has resources on early identification, prevalence, elements of effective practices, appropriate services, family support, federal resources and low-cost or no-cost NECTAC publications.

Head Start Center for Inclusion This website is funded by the Office of Head Start with the goal of increasing the competence, confidence, and effectiveness of Head Start personnel in providing services to young children with disabilities, including autism spectrum disorders. The site includes video and print resources for trainers, administrators, and practitioners.

Interactive Collaborative Autism Network (ICAN) Free online instructional modules for anyone who lives with, teaches, or otherwise supports children and youth with autism spectrum disorders (ASD), including parents, teachers, and individuals with ASD.

Kansas Inservice Training System (KITS) - This website - is a part of the Kansas State Department of Education (KSDE) Technical Assistance System Network (TASN) and a long-standing program of the University of Kansas Life Span Institute at Parsons.  KITS is supported through grants from the Kansas State Department of Education-Student Support Services and the Kansas Department of Health and Environment-Infant/Toddler Services. The KITS project is designed to provide a training and resource system for early intervention networks and early childhood special education program staff through collaborative training and technical assistance activities on a comprehensive statewide basis. Additionally, parents and staff of agencies collaborating with these early intervention networks and preschool programs can be involved in activities associated with the project. From the website, professionals and family members can sign up for training events, download free technical assistance packets on a wide variety of topics, find links to state and national resources, sign up for one of the list services, or locate and request materials from the resource center at no cost.

Georgetown University Maternal and Child Health Library Knowledge Path: Autism Spectrum Disorders  Site offers a selection of current, high-quality resources about ASD screening and diagnosis, treatment and intervention, communication, education, vocational challenges, and impact on family life. Separate sections identify resources that address concerns about vaccines, environmental health research, and inappropriate use of seclusion and restraints. Separate briefs point to resources for families and schools.

National Autism Center (NAC) National Standards Project  (NSP) The NAC is a nonprofit organization that sponsored the recently completed National Standards Project, an effort to use scientific merit to identify evidence-based guidelines for treatments of individuals with ASD younger than 22 years of age. The focus of the project was limited to interventions that can reasonably be implemented with integrity in most school or behavioral treatment programs (excluding biomedical literature for ASD). A panel of multidisciplinary autism researchers applied a rigorous scoring system to evaluate the quality and usefulness of interventions for individuals with ASD described in nearly 1,000 studies. In September 2009, the NSP released a 160-page report classifying ASD treatments as established, emerging, or unestablished.  A 2-page summary, summary of findings, or full report can be downloaded from the website.

National Information Center for Children and Youth with Disabilities (NICHCY) This site provides comprehensive information on autism spectrum disorders, including a 6 page fact sheet in English/Spanish, tips for parents and teachers, and links to state specific resources.

National Institute of Child Health and Development  The goal of this site is to provide easy access to the most current information about NICHD research projects, publications, news releases, and other activities related to autism and similar disorders.  The NICHD is one of several institutes doing research into various aspects of autism, including its causes, prevalence, and treatment.

National Professional Development Center on ASD Based on their published criteria of efficacy established through peer-reviewed research, the National Professional Development Center has to date confirmed the evidence base for 24 interventions for individuals with ASD. Evidence Briefs are available for each of the following practices (in alphabetical order): Computer-aided instruction; Differential reinforcement; Discrete trial training; Extinction; Functional behavior assessment; Functional communication training; Naturalistic interventions; Parent-implemented interventions; Peer-mediated instruction/intervention; Picture Exchange Communication System; Pivotal response training; Positive behavioral supports; Prompting; Reinforcement; Response interruption/redirection; Self-management; Social skills training groups; Stimulus control/Environmental modification; Structured work systems; Task analysis; Time delay; Video modeling; Visual supports; VOCA/Speech generating devices.  Additional resources include an online module on Early Identification of ASD and a online course on ASD. 

• The center is partnering with the Ohio Center for Autism and Low Incidence (OCALI) in creating Autism Internet Modules that can be accessed at no cost. Training modules supporting the 24 evidence-based practices are available at Autism Internet Modules

Sibling Support Project  Based on belief that all disabilities, illness, and mental health issues affect the lives of all family members. Mission is to increase peer support and information for brothers and sisters of people with special needs and to increase parents’ and providers’ understanding of sibling issues through workshops, websites, and written materials.

TASN Autism and Tertiary Behavior Supports Project is a part of the Kansas State Department of Education's (KSDE) Technical Assistance System Network.  The Project assists Kansas school districts in building local capacity to serve students with diverse learning needs through professional development and technical assistance. This mission is carried out through the creation of networks of individuals (i.e., mini-teams) with high levels of expertise in serving children with intense cognitive, communicative, and/or behavioral concerns; the development of Communities of Practice (CoP); and the identification of local resources. In recent years, in collaboration with Families Together, KITS, and the Kansas Department of Health and Environment, supports for Infant-Toddler Networks have been developed. On the website, professionals and families can find more information about the Project’s services, along with a link to the free resource lending library.

Technical Assistance Center on Social Emotional Intervention (TACSEI) Sponsored by the Office of Special Education Programs, this grant takes the research that shows which practices improve social-emotional outcomes for young children with, or at risk for, developmental delays or disabilities and creates free products and resources to help decision makers, caregivers, and services providers apply these best practices in the work they do every day.

Treatment and Education of Autistic and other related Communication Handicapped Children (TEACCH) Funded since 1964, this research based approach centers around understanding autism, adopting appropriate adaptations, and a broadly-based intervention strategy building on the skills and interests of the individual. Sponsor of The Journal of Autism and Developmental Disorders and other publications.

U.S. Department of Health and Human Services, Administration for Children and Families created a web page with information and resources about autism spectrum disorders specifically for early childhood providers. Find practical tips, fact sheets, and links to websites that offer free, high quality resources for providers and families.

Wrightslaw Parents, educators, advocates, and attorneys will find information about special education law, education law, and advocacy for children with disabilities, including autism.

Zero to Three National Center for Infants Toddlers and Families  The mission of this national non-profit organization is to promote the health and development of infants and toddlers by informing and training professionals, parents, and policymakers in practices that improve the lives of infants, toddlers and their families.  In the section on Behavior & Development, see What is PDD?

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Worksheet for Identifying and Describing Local Resources For Families of Young Children With Disabilities, Including ASD

Directions:  Go to the websites listed to find out the services offered for families in your area. Provide a short description of services available, contact information, address, and phone number(s).

Area Office for Kansas Department for Children and Families (DCF) - Find your local area access points for DCF services at this link.

Child Care and Resource and Referral Agency - Find your district office and call center at this link.

Community Mental Health Center - Find your area mental health center from the map at this link.

County Health Department - Find your local health department in the Kansas Public Health Directory PDF at this link.

Head Start/Early Head Start - Find out if there is a Head Start or Early Head Start program in your area at this link.

Parents As Teachers - Click on the map at the link to find out if there is a PAT program in your area.

Local Interagency Coordinating Council (LICC) for Early Childhood - Contact your local Infant Toddler Services program for information about participating in the Local Interagency Coordinating Council in your community. LICC information is available here on KSkits.org website. 

Worksheet

Area Health Care Providers with Expertise or Experience with Young Children with Disabilities, including ASD:

Physicians:

Dentists:

Eye Doctors:

Audiologists:

Psychologists:

Others:  Local family support groups, parenting classes, library story hour, parks and recreation program classes, commercial children’s classes (dance, gymnastics, etc.) where young children with disabilities, including ASD, can be successfully supported:

_{Kansas Inservice Training System.  (2009, February).  Worksheet for identifying and describing local resources for families of young children with disabilities, including ASD.  Parsons, KS:  University of Kansas Life Span institute.}

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Implementation Checklist:  Talking with Parents about ASD

The KITS packet Talking with Parents about ASD was developed to assist program personnel to move from research to practice and from identification of information to implementation. We encourage you to use this checklist for a variety of purposes. The checklist can be used as a self-assessment.  The checklist can be shared among colleagues for use in development of plans for changing practices. The checklist can be used by supervisors to determine the extent to which you/your program adheres to the practices listed (pre/post). The checklist can be used at specific points in time or as part of an ongoing monitoring process.  When you or your program are implementing all of the objectives at a level of 4 or above, we would appreciate it if you would send a copy of your completed checklist(s) to email kskits@ku.edu with the subject line: TWP Checklist.

For each learner objective of the Talking With Parents packet, check the number that corresponds with you or your program’s current stage of implementation.

• Stages of Implementation
  • Contemplation (still thinking about it) or preparation (getting ready to do it)
  • Action (I am trying it out)
  • Implementation (I am working out the bugs as I do it)
  • Maintenance/Sustainability (it’s part of my practice)
  • Improvement/Innovation (feedback solicited/incorporated)

Names:

Program:

Date TWP Initiated:

Date of Checklist:

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Additional Resources

Autism Speaks Resource Guide

ECRC List of Materials

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Packet Evaluation

Please take a few minutes to complete the brief online survey above. Your feedback is central to our evaluation of the services and materials provided by KITS.

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