Representatives Advocacy Letter
Advocacy Goal and Scope
These letters compare existing functional deficit protocols in vision and hearing with the current gap in speech-related evaluation, prognosis, and accommodation.
Increase awareness of Kitzerow's Autism and the Comorbidities Theoretical Model and its implications for profound autism.
- Separate autism from co-occurring comorbid traits
- Recognize that comorbid traits often cluster and shape functional outcomes
- Increase awareness that profound autism often reflects autism plus significant comorbid burden
- Support earlier diagnostic processes for autism traits and for comorbid traits
- Align support systems with the full complexity of profound autism rather than diagnosis alone
What Systems Must Add for the Autism and Comorbid Traits Framework
- Structured identification of co-occurring comorbid traits beyond the autism diagnosis
- Analysis of traits by regulatory system domains: immune, nervous system, cellular repair, metabolism, genetic regulation
- Evaluation of how these domains interact to produce clustered functional outcomes
- Analysis of disrupted temporal domains: ultradian, circadian, circannual, developmental, and age-related patterns
- Diagnostic frameworks that separate autism traits from comorbid functional impairments
- Use findings to guide early treatment vs accommodation decisions
This establishes a system-level approach that reflects how multiple domains interact to shape function.
What Systems Must Add for Nonverbality
- Recognition of nonverbality as an autism comorbidity and functional sensory deficit
- A defined diagnostic and prognostic protocol for children who cannot produce functional speech
- Earlier identification of who may benefit from treatment and who requires accommodation
- Awareness of language deprivation syndrome as a preventable secondary harm
- Laws and guidance supporting early access to AAC and other appropriate communication methods
- Recognition of nonverbality as a disability class comparable to hearing and vision loss in its functional impact
This addresses the specific gap in how loss of functional speech is identified, evaluated, and accommodated.
Federal vs State Advocacy Scope
These letters are designed to target different parts of the system. Understanding the distinction helps advocates direct requests appropriately and increases the likelihood of action.
Federal advocacy establishes standards and legal expectations. State advocacy determines how those standards are implemented in real-world systems.
What Federal Action Controls
- National standards under IDEA, HHS, and Medicaid
- Legal expectations for early access to communication accommodations
- Recognition of nonverbality as a functional sensory disability classification
- Requirements for diagnostic and prognostic evaluation when speech is not functional
- National awareness of language deprivation syndrome
Federal action sets what systems are required to recognize and provide.
What State Action Controls
- How early screening and evaluation are conducted in practice
- How autism and comorbid traits are separated during service planning
- Implementation of diagnostic and prognostic pathways
- Timeliness of access to AAC and communication supports
- Consistency of services across districts and programs
State action determines how quickly and effectively children receive support.
Federal Action on Communication Access and Diagnostic Standards
Structured for federal legislators and agencies with clear, actionable requests within existing authority.
Subject: Strengthening Federal Standards for Autism Evaluation and Communication Access
- Direct the U.S. Department of Education to require evaluation processes under IDEA that distinguish core autism traits from co-occurring functional impairments
- Support federal guidance recognizing that co-occurring traits often cluster and should be evaluated through structured diagnostic processes that inform functional outcomes
- Establish that lack of functional speech triggers a defined diagnostic and prognostic evaluation pathway
- Direct CMS to clarify AAC and other appropriate communication methods as medically necessary under Medicaid EPSDT when speech is not functionally available
- Encourage awareness of Kitzerow's Autism and the Comorbidities Theoretical Model and its implications for understanding autism and comorbid trait interaction
Dear Senator/Representative [Last Name],
I am writing to advocate for targeted federal action addressing gaps in how autism is evaluated and supported, particularly in individuals with significant functional impairments.
Autism is currently treated as a single diagnostic category. In practice, individuals often present with co-occurring traits that significantly impact function and development. These traits are not consistently separated from core autism features during evaluation, which limits clarity in diagnosis, intervention planning, and long-term support.
Increasing federal emphasis on distinguishing autism traits from co-occurring functional impairments would strengthen evaluation processes under IDEA and support more precise identification of individual needs. This distinction is critical to ensuring that services are aligned with functional challenges rather than diagnosis alone.
Co-occurring traits do not occur randomly. They often cluster in patterns that shape developmental outcomes. However, current systems do not consistently evaluate these patterns through structured diagnostic processes. Supporting federal guidance in this area would improve consistency across systems and help translate evaluation findings into actionable support decisions.
One of the most significant examples of this gap is seen in individuals who cannot produce functional speech. The absence of speech represents a measurable functional limitation, yet there is no standardized requirement that this triggers a defined diagnostic or prognostic pathway.
In other functional sensory deficits, such as blindness and deafness, loss of function initiates a clear process that includes evaluation of underlying mechanisms, determination of developmental trajectory, and provision of appropriate accommodations. No equivalent framework consistently exists for speech.
Establishing a federal expectation that lack of functional speech triggers structured evaluation would improve early identification, provide clearer prognostic guidance, and support more consistent decision-making across systems.
Access to communication is also dependent on clear policy alignment. Without explicit clarification, access to augmentative and alternative communication (AAC) varies widely. Directing CMS to clarify AAC and related supports as medically necessary under Medicaid EPSDT would reduce delays and ensure that individuals receive appropriate communication access when speech is not functionally available.
Kitzerow's Autism and the Comorbidities Theoretical Model provides a framework for understanding how autism traits and co-occurring functional impairments interact. Increasing awareness of this model may support earlier identification of these patterns and more consistent evaluation and intervention planning.
These actions can be implemented within existing federal authority and would improve alignment between evaluation, access to communication, and long-term developmental outcomes.
Thank you for your time and consideration.
Sincerely,
[Your Name]
[City, State]
State Action on Evaluation Pathways and Communication Access
Focused on implementation within early intervention, education, and state service systems.
Subject: Strengthening State Evaluation Pathways and Communication Access in Autism
- Require evaluation processes that distinguish core autism traits from co-occurring functional impairments during early intervention and special education assessments
- Support state guidance recognizing that co-occurring traits often cluster and should be evaluated through structured diagnostic processes that inform functional outcomes
- Establish that lack of functional speech triggers a defined diagnostic and prognostic evaluation pathway within early intervention and school systems
- Ensure timely access to AAC and other appropriate communication methods when speech is not functionally available
- Increase awareness of Kitzerow's Autism and the Comorbidities Theoretical Model to support improved evaluation and intervention planning
Dear [Representative/Agency Name],
I am writing to advocate for improvements in how autism is evaluated and supported within state early intervention, education, and service systems.
Autism is often addressed as a single diagnostic category. In practice, individuals frequently present with co-occurring traits that significantly affect function and development. These traits are not consistently separated from core autism features during evaluation, which limits clarity in service planning and support.
Strengthening evaluation processes to distinguish autism traits from co-occurring functional impairments would improve how services are matched to individual needs. This distinction is critical for ensuring that intervention and support decisions are based on functional impact rather than diagnosis alone.
Co-occurring traits often cluster and influence developmental outcomes. However, current state systems do not consistently evaluate these patterns through structured processes. Supporting clearer evaluation pathways would improve consistency across early intervention programs, school systems, and service providers.
One of the most significant examples of this gap is seen in individuals who cannot produce functional speech. The absence of speech represents a measurable functional limitation, yet there is no standardized requirement that this triggers a defined evaluation pathway.
In other functional sensory deficits, such as vision and hearing loss, a loss of function initiates a clear process that includes identification of the affected system, evaluation of underlying mechanisms, and determination of appropriate supports or accommodations. No equivalent structure consistently exists for speech.
Establishing a requirement that lack of functional speech triggers structured evaluation would provide clearer guidance for teams, support earlier identification of needs, and improve consistency in how communication access is determined.
Access to communication also varies widely across systems. Without clear expectations, access to AAC and other communication methods is often delayed. Ensuring timely access when speech is not functionally available would reduce variability and support more effective communication development.
Kitzerow's Autism and the Comorbidities Theoretical Model provides a framework for understanding how autism traits and co-occurring functional impairments interact. Increasing awareness of this model may support earlier identification and more consistent evaluation and intervention planning at the state level.
These actions can be implemented through state guidance and policy within existing systems and would improve consistency, access, and long-term outcomes for children with the highest support needs.
Thank you for your time and consideration.
Sincerely,
[Your Name]
[City, State]