A huge thank you to everyone who completed our Community Needs Assessment survey! We are beginning to gather important data that will help inform programming, research, educational interventions, and resources to benefit our community. As promised, we want to return that information to all of you. So here is a recap of things we have learned so far.
Most respondents were parents.
The majority of the people completing the survey (78%) described themselves as "a parent of someone with dysgraphia/specific learning disorder of written expression/writing difficulties." So we have focused our analysis on that group.
Dysgraphia shows up in many ways.
We have heard about this on our webinars, but dysgraphia is not just about handwriting. Most parents reported that their children had difficulties in all three areas: handwriting, spelling, and composition.
This has important implications for schooling. Understanding your child's specific strengths and areas for growth will help determine which of these areas need support and interventions.
7-8 was the most common age of diagnosis.
More than three-quarters of the parents reported that their child had an official diagnosis of dysgraphia/specific learning disorder of written expression. While there was a broad age range, it was most common to have a diagnosis around age 7-8 , corresponding to 2nd or 3rd grade in the United States. This is often an age when the amount and complexity of writing begins to increase in school.
Two-thirds of the students were also diagnosed with ADD or ADHD. 45% were dyslexic as well as dysgraphic.
These results support other data that exists that many different types of learning differences can co-occur at the same time, but they do not always. To ensure proper support of students, parents and educators need to learn as much as possible about the strengths and areas of improvement for every child as an individual. This leads us to our next observation:
In this survey, two-thirds of the students were diagnosed by an outside, private neuropsychologist or psychologist. While this is not surprising, it is indicative of a major problem.
We are very aware that the survey is not a representative sample of the U.S. population. It was only distributed through the Dysgraphia Life e-newsletter and on our social media. While there was participation from 31 different states and internationally, 85% of respondents identified as non-Hispanic, White. These data clearly do not reflect all communities of color and likely are highly biased towards higher socioeconomic status given the internet-based methods of delivery.
Even looking at a potentially privileged subset of the population, most parents still are not able to have their school district identify learning differences in written expression. Only 16% reported diagnosis by a school-based psychologist and 14% by an educational diagnostician. One write-in comment explicitly stated, "This is a condition that needs more attention because I had to get a specialist to diagnosis my child. The school only diagnosed symptoms." We are not surprised to hear this, as we hear these stories from our community regularly. However, private testing can be very expensive and is consequently not an option for many. A lack of understanding and diagnosis of specific learning disability of written expression in school settings will contribute to major educational disparities.
Less than half of students were being taught with Structured Literacy/Orton-Gillingham based curricula
Here, the "Yes" category even includes the respondents who wrote in comments such as "Yes at home, but not at school" or "just started". Solutions need to be tailored to a child's difficulties and some children may just be struggling with handwriting; however, there is a lot of evidence that these types of curricula that are based on the Orton-Gillingham approach are the best way to teach reading AND writing skills (particularly spelling) to the majority of students, including those with learning differences.
In school, both Individualized Education Programs (IEPs) and 504 Plans are being used for students with specific learning disability of written expression.
Roughly 60% of the parents reported that their child was in a public school. Nearly half were in elementary school with another quarter in middle school/junior high and a quarter in high school or college. The good news is that many people have been able to put a formal plan in place. For that subset, we also queried what was included in those plans.
Top 5 Most Common School-based Accommodations:
1) Extra time for assignments and tests
2) Talk-to-text/Voice Typing
3) Note taker/Scribe/Copies of Notes
4-tie) Use of graphic organizers
4-tie) No or reduced copying
Over 90% of parents with school accommodations for their student reported having extra time as one component their plan. The other accommodations in the top 5 were all reported by 50% or more. Software tools like Co:Writer, Google Read and Write, and use of resources like spacing paper and hand strengthening fidget toys.
Thank you again to everyone who participated. We learned a lot of valuable information that we are pleased to share back with you. One of our next goals is to expand this data gathering to a larger, more formal setting. We have started creating a Dysgraphia Registry, where our community can join and provide these answers as part of an ethics board-approved research protocol and then update responses as time goes by. This will allow scientists and researchers to put your experience to good use and to learn more about learning differences in written expression. Stay tuned for more information later this year.
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