Richmond Toddler Clinic: Collaborative efforts in early identification of children with Autism
Tracy
1Virginia
1
White ,
John
2
Lindstrom ,
The Problem . . .
Half of Virginia’s Children with Autism Spectrum Disorders
Diagnosed after age Three Years
Virginia’s lead agency for Early Intervention services reported that the
children they serve often go undiagnosed because of extended wait lists
at diagnostic clinics and because of the challenges that low-income,
disadvantaged families face in accessing services. Cultural and
language differences are additional barriers to early diagnosis and
referral for intervention.
inadequate information and understanding regarding child
development, ASDs, and what to do when early signs of
an ASD are noticed;
lack of regular and standardized developmental
screenings;
delays when parents begin to pursue a diagnosis; and
limited information about how to obtain services once ASDs have
been identified and later diagnosed.
The Solution:
A Collaborative Approach to
Toddler Assessment Services
School divisions and Early Intervention (EI) programs share
responsibility for children with disabilities who are
under the age of three years. Representatives from
both agencies recognized the need to identify
children with ASD earlier in order to begin
appropriate intervention services.
Improved instruments for the diagnosis of ASD in toddlers were
becoming available and school and EI personnel were interested in
additional training to allow them to incorporate those instruments into
their assessment process.
Many parents indicated that they were the first person to notice delayed
or atypical development, often before their child’s second birthday, but
they waited an average of five months to seek professional help after first
noticing symptoms.
4 main issues were thought to contribute to delayed diagnoses:
Diagnosed Children
Undiagnosed Children
Administrators from five agencies formed the Richmond Planning
Group to design a diagnostic clinic targeting very young children for
whom there was a question of an autism spectrum disorder.
In addition to these systemic barriers, there are real clinical challenges
that contribute to delays in the diagnosis of autism spectrum disorders in
toddler-age children. Descriptions of autism and diagnostic criteria have
generally been developed with older children in mind. Compared to
older children, toddlers are often more difficult to engage in clinical
interaction and assessment. Some parents are reluctant to consider the
possibility of an autism spectrum disorder in their toddler. And, finally,
clinicians must be prepared for the uncertainty that is inherent in the
assessment of very young children; diagnostic conclusions must
sometimes be rather tentative.
Richmond Behavioral
Health Authority
Tolerating
uncertainty
Toddler Clinic Model:
Essential Elements
•
•
•
•
Multidisciplinary team - transdisciplinary practice2
Autism Diagnostic Observation Schedule (Module T)3
Autism Diagnostic Interview - Revised (partial) 4
Play-based assessment by speech/language, occupational therapy,
early childhood development
• Team discussion (including parents) of diagnosis and next steps in
intervention
Team functioning emphasizes trans-disciplinary practice
and use of the best tools available to support diagnostic
assessment.
A primary goal of the team process has been to
effectively engage parents as active partners in
diagnostic deliberation and intervention planning.
Richmond Public
Schools
Benefits of Multi-agency Collaboration
for Early Identification
Impact on the Individual Family Support Plan
Commonwealth
Autism Service
Applying
diagnostic
criteria to
toddlers
• Identifying a single point of entry for access to all services in the
state needed for those with a developmental disability, including
ASDs
• Improving access to screening and early diagnosis
• Enhancing early intervention and treatment of children with ASDs
• Improving educational services for children and youth with
disabilities, including ASDs
& Donald
1,5
Oswald
Collaboration between early intervention services and
the school serves to smooth the path to intervention
and to effect a seamless transition across agencies.
Diagnostic Challenges
JLARC recommendations to improve services in Virginia included:
Cristen
4
McClanahan
LEND, 2Richmond Behavioral Health Authority, 3Richmond Public Schools, 4Infant and Toddler Connection, 5 Commonwealth Autism Service
Background
In 2008 Virginia’s General Assembly directed the Joint Legislative Audit
and Review Commission (JLARC) staff to examine the services available
to Virginians with autism spectrum disorders (ASDs) in the
Commonwealth. The JLARC report1 found that half of children with ASDs
in their sample were diagnosed after age three and the number of
children identified with an ASD for special education purposes peaked at
age nine.
Maria
3
Beck ,
Infant & Toddler
Connection - RBHA
• Identification of essential Early Intervention supports and services to
address the unique needs of the child with ASD
• Support of the family’s interactions with their child during daily
activities and routines that occur outside of intervention visits
• Exploration of additional or supplemental community services
• Transition planning from EI to appropriate community supports and
services for the child with ASD
Impact on the Individualized Education Plan
Virginia Leadership Education in
Neurodevelopmental Disabilities
(Va-LEND)
Engaging
toddlers in
the process
Engaging parents
in the process
Agency representatives collaborated to address administrative
issues and challenges including:
•
•
•
•
•
•
Transparency in the referral and consent process
Establishing and maintaining clarity regarding agency roles
Three-way release of information
Determining who owns the record
Sustaining the effort and expanding training partners
Funding to support expansion of the service
• Increased and targeted focus on specific communication and social
skills deficits
• Identification of evidence-based practices matched to skill deficits
• Alignment of services appropriate to the child’s deficits
• Identification of professional development needs
References
1. Joint Legislative Audit and Review Commission. (2009). Assessment of Services For Virginians With
Autism Spectrum Disorders. House Document No. 8, Commonwealth of Virginia.
2. Orelove, F. P. (1994). Transdisciplinary teamwork. In H. G. Garner & F. P. Orelove (Eds.), Teamwork
in human services: Models and applications across the lifespan (pp. 37-59). Boston: ButterworthHeinemann.
3. Lord, C., Luyster, R.J., Gotham, K., & Guthrie, W. (2012). Autism Diagnostic Observation Schedule,
Second Edition (ADOS-2: Toddler Module). Torrance, CA: Western Psychological Services.
4. Rutter, M., Le Couteur, A., & Lord, C. (2003). Autism diagnostic interview, revised. Los Angeles:
Western Psych Services.