“When I first heard that I had dyslexia, I was overwhelmed by emotions; I was angry, sad, and very confused. With time, I began to see my diagnosis as a self-affirmation. I had been correct in suspecting that I had a problem with learning, when many of the adults around me said that the only issue was my anxiety. I had adapted to school, devising personal coping strategies and learning techniques.”
When we conducted a survey of this community about the timing of their assessment for dyslexia, a number of striking observations were seen:
MOST DYSLEXIA IDENTIFICATION IS LATE
Although there are current efforts to identify early (perhaps too early, for example before kindergarten), dyslexia identification is typically quite LATE.
Elementary school is still the most common time when dyslexia is formally identified (58%), with middle school made up only 7% of the total having dyslexia formally identified then. Why is dyslexia identification so low in the middle school years? It might be that schools are less focused on literacy per se in the middle years. Being able to read fluently may be assumed, although almost half of the students known to be dyslexic haven’t been assessed yet. What this should say to parents, tutors, or teachers of middle grade students with dyslexia is that they should be alert to the possibility that their student’s school problems could be due to unrecognized dyslexia.
Small increases in identification seem to take place in high school and college – why? One reason may be the need to have accommodations in place for college entrance exams and college. The reading and writing demands increase dramatically in college (and financial aid often requires a full course load) so some students may find that getting their degree is impossible unless that have dyslexia formally identified and assistive technology and extra time on tests are granted as accommodations.
DELAY IN IDENTIFICATION
65% of individuals surveyed in our community (n = 188) said that formal diagnosis was delayed by at least 1 year. 22% said the delay in identification has been more than 3 years, and 23% have still not received adequate testing.
Reasons for delays varied, but the most common answers were not knowing where to look or how to find answers to their student’s difficulties, others said that they were told by others to “wait” to see if testing was necessary. 1 in 6 asked to have their student tested at school, but the school refused.
CONSEQUENCES OF DELAY IN DYSLEXIA IDENTIFICATION
The most common academic consequences of delayed dyslexia identification was students falling behind in all subjects. Dyslexia doesn’t just consequences for English class; it has implications for EVERY school subject.
There are good intentions with early dyslexia identification (for instance in pre-K or kindergarten), there is a tremendous societal harm with focusing all the funding for dyslexia on early ages. It is a good idea to educate early elementary teachers and start students on a strong literacy footing, but it is important to face the truth that current dyslexia identification policies result in more dyslexic students missed than identified, and these individuals deserve not to be passed over.
Middle school and high school students who go unrecognized fail to receive appropriate supports and intervention, to get counseled to avoid higher education, and to receive accommodations for classroom or college entrance exams. Dyslexic students who never were formally identified get passed over for scholarships, may fail to meet GPA requirements for athletic teams, and then may fail to get their degrees because course work is not accessible and they cannot use assistive technology to show their work. In trade occupations, a failure to be formally identified may cause trouble on licensing exams taken without appropriate accommodations, or even promotions to supervisor positions if appropriate supports aren’t in place. Unrecognized dyslexia can also give individuals unfair hurdles at the hiring, project, and performance review levels.
With the recent passage of dyslexia laws in many states, there have also been rebranding of existing reading tools as measuring skills likely to be impacted by dyslexia, but many (some tools are as brief as 1 minute to administer) are not reliable to dyslexia screeners because the tests are too limited in their scope. This does not mean they are not providing valuable information; it means that they aren’t reliably identifying people who are dyslexic – the tests are often narrowly applied – for instance to direct one’s level in an established reading software.
BENEFITS OF TRUE DYSLEXIA SCREENING AND COMPREHENSIVE TESTING
The benefits of true dyslexia screening and comprehensive testing is that ideally test results will provide recommendations and suggest accommodations that can be used for years in school or in the workplace.
The Neurolearning Dyslexia Screening Test (Neurolearning is a social purpose corporation partner to Dyslexic Advantage) and it has a $39.99 online test that generates a 15+ page report with recommendations appropriate for school or workplace.
It provides a dyslexia score based on test results and has been used by leading assessment centers like the Office of Accessible Education at Stanford University. A high score qualifies individuals for the free e-book service (US citizens) through Bookshare.org as well as other resources. The screening test is superior to conventional reading screening tests because of its inclusion of auditory and visual processing features, sensitivity to discrepancies that may arise due to giftedness and dyslexia, and sensitivity to factors such as inattention, more extensive language disability, or intentional inaccurate responses (see more about the test HERE).
Some users have used the documentation to successfully request IEP or 504 supports in schools or accommodations at work, but this result may vary. Some institutions may demand more extensive (i.e. multi-hour) testing for accommodations. If potential test-takers are concerned that they may not be able to interpret the results of the report, the test can also be administered through a dyslexia professional, like a psychologist, or tutor.
Sometimes it is possible to get free or low cost testing through your public school, private school, college, or university. Some community colleges require you to be enrolled in a course, but otherwise assess dyslexia for free. Some corporations may pay for outside testing and then even have free assistive technology and technology trainers if dyslexia is identified.
Professionals that test for dyslexia are typically learning specialists that may be educational psychologists, neuropsychologists, MDs (neurologists, developmental pediatricians), or other educational specialists with specialty training (for instance MEds, educational therapists). Because of the pandemic, many professionals are also conducting comprehensive testing remotely (like the Summit Center on the opposite page). If you are an adult, always check beforehand if a professional is testing adults or only children. In the past, some basic dyslexia assessment was available for free through the Department of Vocational Rehabilitation in the US, but we have heard back from some saying that services have been more limited since the start of the pandemic.
More information about workplace accommodations is available through AskJan.org, another free service paid for by the federal government.
Even many who may have considered dyslexia for years, but not formally had their dyslexia identified, may find formal test results organizing and empowering. Researcher Dr. Ruth Gwernan Jones found that dyslexia identification seems to cause of cascade of realizations and downstream actions that lead to self-acceptance and positive coping. From her work:
“without identification of dyslexia, difficulties with reading and writing are most often attributed by others such as teachers, peers and/or parents to low intelligence and/or lack of effort. Some participants rejected this understanding and others internalized it…Identification of dyslexia provided a means of making sense of difficulties, bolstered self-belief in intelligence, and initiated changes in support and personal motivation which, for the majority of participants, were notably beneficial.”
“My diagnosis has also helped me to take myself a little less seriously. Now, when I make a dyslexic mistake, I usually laugh. Understanding my dyslexia (both the strengths and the weaknesses that come with it) makes it possible for me to feel more comfortable with my learning difficulties and with myself. Soon after I was diagnosed, I started making jokes about myself, talking to my friends about my challenges, and cutting myself slack when I needed it. Of course, I still experienced moments in school when I found it hard to laugh, but these times were greatly reduced once I had a concrete explanation that validated my struggle.”