Aspects of Assessments
Most measures are developed using typically developing persons. What this means is that an assessment is likely to yield scores that compare the individual with Fragile X syndrome to their age-peers, not to other people of the same developmental level.
In addition, some assessments may be inappropriate for use in Fragile X syndrome as they do not accommodate for the behaviors and other characteristics of those with Fragile X syndrome.
Lastly, assessments developed for older adolescents and adults may have materials and items less suited for individuals with Fragile X syndrome, thus making it harder for them to engage and participate.
Principles of Assessment Selection
One of the most important aspects of Fragile X syndrome that must be considered in the assessment process is developmental level. Given that many individuals with Fragile X syndrome have developmental delays, knowing a developmental age estimate prior to assessment (often based upon an initial interview with a caregiver and behavioral observations) will greatly aid the assessor in choice of instruments and starting points for tests.
There are several considerations for administration and scoring of developmental testing for individuals with Fragile X syndrome.
- Individuals may benefit from multiple opportunities to demonstrate skills when inattention interferes, or they have difficulty engaging.
- It is especially important for clinicians to pair performance on developmental measures with parent-report.
- Reporting on skills that are observed during an evaluation, but outside of the developmental test, may also provide a more complete picture of a child’s functioning.
- Individuals will likely benefit from clinicians moving between developmental tests to administer items. For instance, shifting between cognitive items (e.g., administering a puzzle item) and language items (e.g., identifying pictures in a book), often maintains engagement more effectively than requiring an individual to complete all items in a single test in consecutive order.
Such flexibility allows the assessor to follow a child’s lead, encourage sustained motivation and attention, and improves overall rapport. Note that, depending on the assessment/test, the examiner may not have the flexibility of changing order of items, and any change will likely be noted in the report.
Limitations of Assessments
One of the primary limitations of developmental testing is that results represent only a snapshot of a person’s full skillset.
It is often difficult for clinicians to fully capture the range of skills a person has based on a measure that is typically completed in 45-60 minutes.
It is especially important to pair results from developmental testing, as noted above, with caregiver-report.
Accommodations That Can Be Made to the Testing Process
- A visual schedule can be quite helpful.
- A practice or warmup period may be helpful.
- Initial testing items should be selected, and are already displayed when starting.
- Keeping a good pace is also important to reduce anxiety caused by waiting on the clinician to get materials organized and ready to proceed.
- Inserting breaks into testing, where access to favorite interests or preferred toys can be granted, may help to support motivation.
When utilizing accommodations or “breaks from standardization” during testing, the key concept to keep in mind is to provide adjustments to the testing process if doing so will allow the person with FXS to demonstrate their ability and knowledge without altering the items or skills being measured.
Primary Domains of Assessment