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The AMA Pediatric guidelines now require the screening for autism at regular “well-child” checkups. To view a brief presentation and overview presented to area pediatricians, click here.

Documents are also available in the Download section, to include screening instruments/information, referral letter sample, and several handouts specific to the professional pediatric population. Feel free to download and use. 

The child’s pediatrician is typically the first professional a parent turns to in regard to treatment options. The Association for Science in Autism Research (ASAR) has a good overview of treatments with the respective literature. Their website can be assessed by clicking here.

From the website, there is a section entitled “Recommendations of Expert Panels and Government Task Forces.” A summary of findings from expert panels and task forces that have reviewed research treatments for individuals with autism suggests that they are in agreement on several points:

  1. Behavioral and educational interventions are currently the main treatments for individuals with ASD.

  2. Of these interventions, approaches based on applied behavior analytic (ABA) have received the most extensive research, and this research indicates that ABA approaches are effective.

  3. Medications also may be effective for some individuals with ASD if they also display challenging behaviors such as aggression or hyperactivity. (Not all individuals with ASD display these challenging behaviors, of course.)

  4. There are a number of areas where additional research is needed especially with older children and adults.

ASAR also provides an inclusive list of suggested books and articles that are listed at the end of this section.

 

Best Practices

Most of the following information was derived from the Best Practice Guidelines for Screening, Diagnosis and Assessment as published by the California Department of Developmental Services and has been gracious to allow reproduction in any form or visual medium. The document in its entirety is available at no charge at www.ddhealthinfo.org.

Screening for ASD within the Primary Care Practice

Primary care providers are generally the first point of contact for parents with concerns and questions regarding their child’s development. Parents expect their pediatricians and family physicians to offer guidance regarding developmental issues; if no help is forthcoming, these parents may turn to other sources. Well-child visits are the logical time and place for developmental surveillance and screening for specific disorders to occur. Although the American Academy of Pediatrics Practice Guidelines (2001) and the federal and state Early and Periodic Screening, Diagnosis and Treatment (EPSDT) schedules require routine developmental surveillance at each well-child visit, numerous studies have shown that these screenings do not occur in most health care practices (Belcher, 1996).  

In practice, time constraints often hinder routine developmental surveillance, and parents often do not voice developmental concerns unless specifically elicited by the PCP (Glascoe, 1991b). In addition, some children are seen only in the emergency room or urgent care clinic for health care, particularly after the age of 2 when the immunization schedule is diminished. When screening does occur, measures used are at times insensitive to communication and social milestones in young children and may miss children with less obvious developmental delays (Greer, Bauchner & Zuckerman, 1989).

Studies have shown that even when parents bring up developmental concerns, some PCPs respond by waiting to see if the delays will resolve spontaneously or by discounting parental observations. They may be unaware of the high degree of accuracy often associated with parental concerns regarding their child’s development (Glascoe, 1991b). While a small number of children do “catch up” without formal intervention and achieve developmental milestones somewhat later than same-age peers, this is the exception.

A significant number of youngsters require early intervention either on a transient or ongoing basis to function within their family and community environment. Furthermore, those children who turn out to be “false-positives” (parental concerns are expressed, but the child has no clinically significant delays) tend to score somewhat lower on developmental domains than those children who are true “negatives” (parents have no concerns, and the child demonstrates typical development) (Glascoe, 2001). Research efforts have demonstrated that screening is manageable within current primary care practice parameters in terms of time and cost (Sasso, 2001). Most screening instruments appropriate for ASD are brief and can be completed in the waiting room. For example, the Modified Checklist for Autism in Toddlers (M-CHAT) and the Pervasive Developmental Disorders Screening Test (PDDST-II) are available free of charge.

The Role of Public Schools in the Early Identification of Children with ASD
The Head Start program is designed for infants and toddlers from birth to age 36 months. Children may receive services if they meet at least one of the following criteria:  A developmental delay in either cognitive, communication, social or emotional, adaptive or physical and motor development, including vision and hearing or established risk conditions of known etiology, with a high probability of resulting in delayed development.  

Early Start services (including evaluation, assessment, early intervention and service coordination) are provided to eligible infants and toddlers and their families at no cost to the family. Early Start is funded by federal funds (IDEA, Part C) and state general funds.

Services are based upon an evaluation of the child’s developmental needs as determined through the Individualized Family Service Plan (IFSP) and may include:

  1. Assistive technology
  2. Audiology
  3. Family training, counseling and home visits
  4. Health services
  5. Medical services for diagnostic/evaluation services only
  6. Nursing services
  7. Nutrition services
  8. Occupational therapy
  9. Physical therapy
  10. Psychological services
  11. Respite
  12. Service coordination (case management)
  13. Social work services
  14. Special instruction
  15. Speech and language services
  16. Transportation and related costs
  17. Vision services

The Early Start program mandates that regional centers and the public schools’ local education agencies work together to conduct “child-find” activities to locate all infants and toddlers who may be eligible for early intervention services. Such child-find activities may include establishing liaisons at local hospitals, distributing materials to agencies and local physicians, giving presentations to local groups and other similar activities. The regional centers and Local Education Agencies (LEAs) are charged with informing the primary referral source of the eligibility criteria for Early Start and the types of services that are available.

Regional centers offer screening services to the public or to select populations to find children who qualify. Intake and service coordinators in the Early Start programs at many of the regional centers are trained to utilize screening instruments designed for detecting symptoms of an ASD. They use these tools during interactions with Early Start families to identify children who are showing “red flags” of a possible ASD. The children can then be referred for further diagnostic work-up to confirm or rule out the presence of an ASD. Services are provided through a local regional center and/or education agency. Local education agencies are primarily responsible for infants and toddlers with solely low-incidence disabilities (vision, hearing and severe orthopedic impairments, including any combination of these low-incidence disabilities). Family resource centers/networks provide parent-to-parent support, information and referral for all families.

The Role of Other Professionals in the Early
Identification of Children with ASD

Professionals other than PCPs are frequently the first individuals to identify young children with developmental difficulties, which may be due to ASD. In particular, speech pathologists and occupational therapists often work with youngsters identified as having language, sensory and motor challenges. Often, these difficulties are related to an unidentified ASD. It is important that training programs for these professionals include information and workshops regarding ASD.

Other health professionals (e.g., licensed marriage and family therapists and licensed clinical social workers) may also encounter a child with an ASD. These professionals should be aware of the common “red flag” indicators of ASD, and should know appropriate referral sources.

Professionals in fields that frequently interact with young children with ASD should be targeted for education and outreach and made aware of indicators of ASD through their respective training programs. Such professionals include:

  1. Child Protective Services social workers
  2. Audiologists
  3. Speech and language pathologists
  4. Occupational therapists
  5. Physical therapists
  6. Nurses and other public health providers
  7. Hospitals/attending physicians
  8. Early intervention specialists

Screening Instruments for General Development and ASD

General developmental tools, as well as screening tools specific for ASD, should be used. Providers may use different tools based upon their training, expertise and scope of practice (i.e., primary care, child development center, regional center). Several general developmental screening tools are designed to identify and track developmental progress in young children. Instruments can vary considerably in terms of administration, ease of use, time and amount of information provided. Developmental measures also vary with respect to their reliability, validity and ability to accurately reflect developmental progress and deviations.

Measurement Format

Paper and pencil screening tests are a quick and efficient method of gathering developmental information from parents. Measures can either assess for the presence of any developmental anomaly or be specific to the identification of a disorder. Other measures are a combination of parent response and clinician-elicited information. Paper measures have several advantages over informal questioning. Most paper measures are validated against age-appropriate behaviors and are reliable in differentiating the target group from a control population. They are also time efficient, and can be administered to parents while they wait for an appointment with the PCP. More importantly, paper measures complement any developmental concerns obtained from the PCP’s query of the parent.

 

Available Tools

Most measurement tools and tests fall into one of four broad categories as follows.

General Developmental Measures

Several general developmental screening tools are designed to gather and track developmental progress in young children. Instruments vary considerably in terms of administration and ease of use, time and wealth of information provided.

Developmental measures also vary with respect to their reliability, validity and ability to accurately reflect developmental progress and deviations.

  • Developmental Profile II (DP II)
  • Ages and Stages Questionnaire (ASQ), 2nd Edition
  • Brigance Screens Infant and Toddler; Early Preschool Screen
  • Brigance Inventory of Early Development, Revised
  • Child Development Inventory (Ireton)

Screening Tools Specific to ASD

Within the past few years, a variety of screening tools specific to ASD have been developed. The following instruments were selected based upon ease of use, and time of administration, efficiency, and acceptable psychometric properties and are recommended for use in primary care practice. Relevance of the instrument and demonstrated utility with very young children were also factors of primary importance in their inclusion.

Those recommended for use in primary care practice include:

  • The Stage 2—Pervasive Developmental Disorders Screening Test (PDDST-II)
  • The Modified Checklist for Autism in Toddlers (M-CHAT)
  • The Checklist for Autism in Toddlers (CHAT)
  • The Screening Tool for Autism in Two-Year-Olds (STAT)

Parent Report Measures

The following measures are completed by parents and they require little time to complete. The staff training required for scoring is minimal.

One of these instruments should be used at the 24-month screening.

  • Modified Checklist for Autism in Toddlers (M-CHAT). The M-CHAT (Robins et al., 2001) is a 23-item checklist designed as a screen for ASD at 24 months of age. The form consists of items in yes/no format that parents can easily fill out in the waiting room. A Spanish translation is also available. Unlike its predecessor, the CHAT (Baron-Cohen, Allen & Gillberg, 1992), it does not require health care staff observation or extensive time to complete. The instrument has demonstrated validity in identifying the majority of children with ASD and developmental delay at 24 months of age. (You can find the M-CHAT in the DOWNLOAD SECTION of the website.)

  • Stage 2—Pervasive Developmental Disorders Screening Test (PDDST-II).
    The Pervasive Developmental Disorders Screening Test-II (Siegel, 2001) is a parent report measure designed to indicate the likelihood of global and pervasive developmental disorders in children from birth through 3 years of age. The scale consists of seventy-one true/false items, presented in six month age intervals. Cutoff algorithms have been established for differentiating children with the likelihood of an ASD from children with other developmental challenges. Parents are asked to rate items as “usually true” for their child or “usually false.” The instrument can take from fifteen to thirty minutes to complete, depending on the age of the child. Scoring instructions are provided to clinicians.  (Appendix E in the Best Practices Guideline document referenced above contains the PDDST-II.)


Parent Report and Direct Child Observation/Interaction

These instruments require clinical observation of behaviors in addition to parent report. Training in eliciting and rating behaviors in question is necessary for administration. The instruments may be used as a supplement to the parent report measures.

  • Checklist for Autism in Toddlers (CHAT)
  • Screening Tool for Autism in Two-Year-Olds (STAT)


Referral of a Child with Possible ASD

A major hindrance to screening and identification of children with ASD is the confusion surrounding the referral process. Many service providers do not know where children with developmental problems should be seen or how to initiate the referral. The PCP needs a resource directory that lists: geographic location served; contact individual;  an explanation of the referral process; insurance plans accepted; and services rendered. (There is a REFERRAL LETTER available in the download section.)

Where to Refer Children with Possible ASD

When concerns arise that a child may have an ASD, a referral should be made for a comprehensive diagnostic evaluation. It is important that these teams and/or individuals demonstrate expertise in evaluating children with ASD.

Early Steps regional center services include case management, advocacy and specialized clinical and resource development services for persons who meet eligibility criteria throughout their life span. In addition, regional centers administer comprehensive services, including early intervention, through their birth through age 3 Early Start programs. Many children with suspected ASD likely will qualify for these Early Start programs. Primary health care providers should be made aware of the regional center that serves children in their area.

Once a positive screen for ASD is obtained, the PCP or other referring professionals should routinely make a referral to the local regional center even if it is concurrent with a referral to a psychology or medical center and/or school district.  This will ensure a timely, more fluid, family-centered diagnostic and assessment process.

School Districts

Local school districts provide educational services to children with special needs from birth through age 22. In terms of the diagnostic evaluation process, the districts’ primary role is to assess the child’s strengths and needs for appropriate educational and intervention planning. School districts perform psycho-educational evaluations with the purpose of qualifying young children to receive special education services within a diagnostic category as designated by the state Department of Education. These educational categories differ from and do not capture the level of detail found in standard diagnostic classification systems such as the DSM-IVTR.  The educational system is NOT responsible for providing concomitant medical or other diagnostic evaluation services that may be necessary for a comprehensive interdisciplinary evaluation. Thus, while it is necessary to refer families of children with ASD and other developmental disabilities to the school district for special education services, referral to a comprehensive diagnostic evaluation is usually necessary for a full diagnostic evaluation.

Conveying Information to Parents

Early identification of children with developmental challenges, and particularly ASD, is delayed by a reluctance to transmit to parents concerns about delays or the need for a referral that may stem from screening test results. The suggestion of a serious developmental disorder is highly stressful and frightening for parents of extremely young children and must be approached in a very sensitive, manner. Literature supports the notion that most parents desire clarity regarding the nature of their child’s difficulties. Parents report that stress is at its peak before and while struggling to secure a diagnosis for their child (Konstantareas, 1989).

PCPs should be prepared to offer parents appropriate referral resources and assist them in contacting other providers and securing future assessments. PCPs should be aware of parent support networks, family support services and other appropriate sources of information, such as the Autism Society of America website. It would benefit all families to receive a follow-up call after referral to be sure that the referral is progressing and that services have been initiated. Referring sources must be highly sensitive to the fact that parents often do not discern the differentiation between screening and diagnostic measures and must repeatedly stress that referral for an ASD evaluation does not mean that the child has ASD.

Supporting Documentation for Referral

Referrals should be accompanied by sufficient information in order to understand the basis for the concern and provide as much background information about the child and the family as possible. Preferably, the PCP or staff from the PCP’s office, rather than the parent, initiates the contact so that coordination of information and services can occur.

Best Practice: Primary care providers have access to an up-to-date resource directory that facilitates the referral process of children and adolescents to a clinical team that specializes in diagnosing ASD.

Best Practice: Within the constraints of confidentiality, efficient sharing of information among clinicians assures timely referral and more complete evaluation of children for concerns regarding ASD.

 

Other portions of this section were provided by information contained in the Report of the Recommendations of the Clinical Practice Guideline - Autism/Pervasive Development Disorders: Evaluation, Assessment, and Intervention for Young Children (Age 0-3 Years) provided by the NY State Department of Health, Early Intervention.

The following book list is provided/recommended by ASAR:

Ariel, C. N., & Naseef, R. A. (Eds.) (2006). Voices from the Spectrum: Parents, grandparents, siblings, people with autism, and professionals share their wisdom. London: Jessica Kingsley Publishers.

Bailey, J., Burch, M.R., and Burch, M. (2006). How to think like a behavior analyst. Mahwah, NJ: Lawrence Erlbaum and Associates.

Bailey, J.S., and Burch, M. (2005). Ethics for behavior analysts. London: Routledge.

Baker, B.L., & Brightman, A.J. (2004). Steps to independence: Teaching everyday skills to children with special needs. Baltimore, MD: Paul H. Brookes Publishing Co.

Bondy, A., & Frost, L. (2001). A picture’s worth: PECS and other visual communication strategies in autism. Bethesda, MD: Woodbine House.

Bondy, A.S,. & Sulzar-Azaroff, B (date). The pyramid approach to education in autism. Newark, DE: Pyramid Educational Products, Inc.

Brolin, D. (1993). Life centered career education: A competency based approach. Reston, VA: Council for Exceptional Children.

Buchanan, S.M., & Weiss, M.J. (2006). Applied behavior analysis and autism:  An introduction. Ewing, NJ: COSAC.

Cohen, M., & Sloan, D. (2007) Visual supports for people with autism. Bethesda, MD: Woodbine House.

Delmolino, L., & Harris, S. L. (2004). Incentives for change:  Motivating people with autism spectrum disorders to learn and gain independence. Bethesda, MD: Woodbine House.

Fling, F.R. (2000). Eating an artichoke: A mother’s perspective on asperger syndrome. Philadelphia, PA:  Jessica Kingsley Publishers.

Fouse, B. (1999). Creating a “win-win IEP” for students with autism. Arlington, TX: Future Horizons.

Fouse, B., & Wheeler, M. (1997). A treasure chest of behavioral strategies. Arlington, TX: Future Horizons, Inc.

Fovel, J.T.  (2002). The ABA program companion:  Organizing quality programs for Children with autism and PDD. New York, NY:  DRL Books, Inc.

Foxx, Richard M. (1982). Decreasing behaviors of persons with severe retardation and autism. Champaign, IL: Research Press.

Foxx, R.M.  (1982). Increasing behaviors of persons with severe retardation and autism. Champaign, IL:  Research Press.

Foxx, R.M.  (1993). Toilet training persons with developmental disabilities:  A rapid program for day and nighttime independent toileting. Champaign, IL:  Research Press

Freeman, S., & Drake, L. (1996). Teach me language. Langley, B.C. and Lynden, WA: SKF Books, Inc.

Glasberg, B.A. (2006). Functional behavior assessment for people with autism:  Making Sense of seemingly senseless behavior. Bethesda, MD:  Woodbine House.

Handleman, J.S., & Harris, S.L. (Eds.) (2001). Preschool education programs for Children with autism (2nd ed). Austin, TX:  PRO-ED.

Harris, Sandra L., and Beth Glasberg. (2003). Siblings of Children with Autism: A Guide for Families, 2nd Edition. Bethesda, MD: Woodbine House

Holmes, David L. (1997). Autism through the lifespan – The Eden Model. Bethesda, MD: Woodbine House.

Howlin, P. (1997). Autism: Preparing for adulthood. London: Routledge.

Jacobson, J., Foxx, R.M., & Mulick, J.A. (2004) Controversial therapies for development: Fads, fashion, and science in professional practice. Mahwah, NJ: Lawrence Erlbaum Associates.

Keenan, M., Kerr, K.P., & Dillenburger, K. (2000). Parent's education as autism therapists: Applied behaviour analysis in context. London: Jessica Kingsley Publishers.

Keenan, M., Kerr, K.P., & Dillenburger, K. (2000). Parents’ education as autism therapists: Applied behaviour analysis in context. Philadelphia, PA:  Jessica Kingsley Publishers.

Klin, Ami, Fred R. Volkmar, and Sara S. Sparrow (Editors). (2000). Asperger’s Syndrome. Place of publication. Guilford Publications, Inc.

Koegel, L.K., & LaZebnik, C. (2004). Overcoming autism:  Finding the answers, strategies, and hope that can transform a child’s life. New York, NY:  Penguin Group.

Koegel, R.L., & Koegel, L.K. (2005). Pivotal response treatments for autism: Communication, social, and academic development. Baltimore, MD:  Brookes Publishing.

Leaf, R., McEachin, J., & Harsh, J.D. (Eds.) (1999). A work in progress: Behavior management strategies and a curriculum for intensive behavioral treatment of autism. New York, NY:  DRL Books.

Lears, L. (1998). Ian’s walk: a story about autism. Morton Grove, IL: Albert Whitman and Co.

Lucyshyn, J.M., Dunlap, G., & Albin, R.W. (Eds.) (2002). Families and positive behavior support:  Addressing problem behavior in family contexts. Baltimore, MD: Paul H. Brookes Publishing.

Maurice, C. (Ed.), Green, G., & Luce, S.C. (Co-eds.) (1996). Behavioral intervention for young children with autism; a manual for parents and professionals. Austin, TX:  PRO-ED.

Maurice, C., Green, G., & Foxx, R.M. (2001). Making a difference: Behavioral intervention for autism. Austin, TX:  PRO-ED.

Maurice, Catherine (1993). Let me hear your voice. A family's triumph over autism. New York: Knopf.

McClannahan, L. E., Krantz, P.J., (1999). Activity Schedules for Children with Autism, Teaching Independent Behavior. Bethesda, MD: Woodbine House.

McClannahan, L.E., & Krantz, P.J. (2005). Teaching conversation to children with autism: Scripts and script fading. Bethesda, MD:  Woodbine House.

National Research Council (2001). Educating children with autism. Committee on Educational Interventions for Children with Autism. C. Lord & J.P. McGee (Eds.)

Newman, B., Reinicke, D., & Newman, L. (2000). Words from those who care:  Further case studies of ABA with people with autism. NY:  Dove and Orca.

Newman, B., Reinicke, D.R., & Hammond,T. (2005). Behaviorask: Straight answers to Your ABA programming questions. NY: Dove and Orca.

Newman, Bobby. (1999). When Everybody Cares: Case Studies of ABA with People with Autism. N.Y.: Dove and Orca.

Partington, J.W. Teaching verbal behavior: An introduction to parents teaching language (video). Pleasant Hill, CA: Behavior Analysts, Inc.

Powers, M.D. (2000). Children with autism:  A parent’s guide (2nd ed.). Bethesda, MD: Woodbine House.

Richman, S. (2001). Raising a child with autism: A guide to applied behavior analysis for parents. London and New York, NY: Jessica Kinglsey Publishers.

Romanczyk, R., Lockshin, S., & Matey, L. (1996). The IGS library of program exemplars (V.9) Appalachian, NY: CBTA

Sallows, G. O., & Graupner, T. D. (2005). Intensive behavioral treatment for children with autism: Four-year outcome and predictors. American Journal on Mental Retardation, 110, 417-438.

Smith, M.D., Belcher, R.G. & Juhrs, P.D. (1995). A guide to successful employment for individuals with autism. Baltimore, MD: Paul H. Brookes Publishing Co.

Stern Feigers, L., & Weiss, M.J. (2004). Sibling Stories: Reflections on life with a brother or sister on the autism spectrum. Autism Asperger Publishing Company.

Sundberg, M.L., & Partington, J.W. (1998). Teaching language to children with autism or other developmental disabilities. Pleasant Hills, CA: Behavior analysts, Inc.

Sundberg, Mark L., & Partington, James W. (1998). Teaching language to children with autism or other developmental disabilities. Place Behavior Analysts, Inc.

Volkmar, F.R., & Wiesner, L.A. (2003). Healthcare for children on the autism spectrum. Bethesda, MD:  Woodbine House.

Wehman, P. (2001). Supported employment in business: Expanding the capacity of workers with disabilities. St. Augustine, FL: Training Resource Network, Inc.

Weiss, M.J., & Harris, S.L. (2001). Reaching out, joining in:  Teaching social skills to young children with autism. Bethesda, MD:  Woodbine House.

Wheeler, M. (2004). Toilet training for individuals with autism and related disorders. Arlington, TX: Future Horizons.

Wrobel, M. (2003). Taking care of myself: A hygiene, puberty, and personal curriculum for young people with autism. Arlington, TX: Future Horizons.

No Referral Needed

DISCLAIMER: Autism is a complex disorder. The information presented here is designed for informational purposes only and is presented as a public service. The contents of this web site are not medical, legal, or technical advice and must not be construed as such. Dr. Marsiglia’s “opinions” are based on research but are nonetheless opinions only. The information contained herein is not intended to substitute for informed professional diagnosis, advice or therapy. The website information is not for diagnosis or treatment without personal consultation.


 

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