Have you ever wondered if [x, y, z] is typical of a child with a disorder of the corpus callosum?
We’re hoping to answer these questions!
The DCC Lifespan Studies are a part of a research program from California Institute of Technology and University of Minnesota, studying the development of infants and children with disorders of the corpus callosum (DCC). We are seeking better ways to help children with DCC grow to their full potential by studying mental and behavioral development in infants and children with DCC. Over the last 10 years, we have collected data from over 500 individuals with a DCC and have published research on a range of aspects of development.
This is both a longitudinal and cross-sectional study, meaning that we track individuals of ages 6 months – 17 years over multiple years. This helps to highlight differences both within and between individuals, leading to a more nuanced overview of typicality.
(Click here to learn about adaptive functioning in infants with ACC!)
(Or here to learn about social and communication skills in infants with ACC!)
We are now beginning to utilize the plethora of “background” information, such as diagnosis information, medical history, developmental history, and more, in this natural history study. Natural history studies are a type of study that investigate the progression of a disorder over time. This is done by using anecdotal information from our participants to get a better idea of what is “typical” of DCC.
Our study includes information about:
- Callosal disorder diagnosis
- Corpus callosum diagnosis (pre- or postnatal)
- Diagnosis methods (scan type/age)
- Diagnosis over time (medical updates)
- Medical history
- Physical health (vision, hearing, cardiac, seizures, medications)
- Psychological health (ASD diagnosis, psychiatric diagnoses)
- Family background
- Family medical history (history of DCC or ASD)
- Demographic information (race, ethnicity, education, income)
- Pregnancy & birth history
- Conception
- Pregnancy complications (illness, physical trauma, medications, substance use)
- Delivery complications (breathing, infections, hospital stays)
- Development history
- Age of first word and steps
- Performance in school, social skills, sleep, feeding issues
Sleep
Of the 488 participants who answered questions about sleep, 193 (40%) reported atypical sleep or difficulty sleeping ever. Of those 193 participants with sleeping difficulties, 29 (15%) report a specific sleep disorder. Of those 29 participants with a specific sleep disorder, 23 (79%) report sleep apnea.
In comparing these rates to the general population, we found that up to 50% of children will experience a sleep problem at some point. Thus, the 40% of our participants that experience sleep difficulties are well within the typical rate. Additionally, between 1% – 5% of children experience sleep apnea, so, while our participants are on the higher end of average at 5% of the overall sample experiencing sleep apnea, it is still within the range in the general population.
In our survey, participants that report sleep difficulty are able to explain their situation in a text box. Of these answers, there were two common answers: “sleep anxiety” and “night terrors”. Of our overall group of 488 participants, 1% report experiencing “sleep anxiety” and 3% report experiencing “night terrors”. According to a 2020 research study, 1% – 6.5% of children experience night terrors, meaning that our participants are well within the range of the general population.
Overall, while our participants experience sleep difficulties, it does not appear to be higher than the general population.
Behavioral Diagnoses
In this webinar, two types of diagnosed developmental delays were discussed: global developmental delay (GDD) and intellectual disability (ID). GDD is defined as a moderate-to-severe delay in at least 2 domains of development (social, motor, language, etc.). The age range for GDD is 0-5 years old. ID is a diagnosis given to individuals with an FSIQ score of less than 70. The range for ID is 5 years and older. For diagnosis categorization of GDD, we were able to use scores from the Vineland Adaptive Behavior Scales (VABS) phone interview with the participants who completed it, which is a questionnaire covering the broad range of development. However, for ID, we do not have the information available to make our own diagnosis categorization, so we relied on self report diagnosis.
Of the 165 participants with VABS data for a GDD categorization, 85 (52%) met the criteria for GDD at some point between 12-36 months old. Of the 173 participants who were in the age range for ID diagnosis and had diagnosis information available, 55 (32%) report an ID diagnosis. At first comparison, it looks as though participants experience a GDD at a higher rate than an ID, however there are possible explanations for this phenomenon. We are able to use a tool to categorize the diagnosis of GDD, with a larger wealth of information, whereas we rely on parent report diagnosis for ID. So, some participants may meet criteria for an ID, but have not been evaluated.
We also looked at neurodevelopmental disorders, such as Autism Spectrum Disorder (ASD), Attention Deficit Hyperactive Disorder, and Pervasive Developmental Disorder – Not Otherwise Specified (PDD). Of the 488 participants in the age range of diagnosis, 68 (15%) have an ASD diagnosis. Of the 172 participants in the age range of diagnosis, 51 (30%) have an ADHD diagnosis. Of the 415 in the 415 participants in the age range of diagnosis, 18 (4%) have a PDD diagnosis.
Figure 1. Percent of participants with ASD diagnosis by age.
Rates of ASD are shown by age in Figure 1. The peak in diagnosis rate is between 12-15 years old, at between 30-45%. It’s been shown that about 33% of individuals with a DCC meet ASD criteria by adulthood. This finding is suggesting that these criteria are beginning to be met in adolescence.
We also looked at the rates of psychological disorders in our participants, such as depression, anxiety, schizophrenia, and Obsessive Compulsive Disorder (OCD). Of the 171 participants in the age range of diagnosis, 11 (6%) have a depression diagnosis, 41 (24%) have an anxiety diagnosis, and 7 (4%) have an OCD diagnosis. Of the 76 participants in the diagnosis age range, 1 (1%) individual reports a schizophrenia diagnosis. However, the participant with the schizophrenia diagnosis reported it at the 14 year survey, but not at the 13, 15, or 16 year surveys, so we are unsure if this is a true diagnosis. Additionally, it is important to note that the participation rate of children above age 7 is considerably lower than that of children age 7 and younger. So, this could have an effect on the diagnosis rates of this age range.
Education and School Programs
Of the 132 participants in a preschool program (under 5 years), 107 (81%) are in a regular education program, 43 (33%) are in a special education program, and 31 (24%) report using resource assistance. 12 (9%) participants are in all three types of programs. 60 (45%) of these participants report no school difficulties. 40 participants (30%) experience processing difficulties, 44 (33%) experience attention difficulties, 24 (18%) experience learning difficulties, 20 (15%) experience behavior difficulties, and 21 (16%) experience impulse control difficulties. Of the 72 (55%) participants that reported any difficulty, 13 (18%) reported only one difficulty, and 82% reported multiple.
Of the 134 participants in a school program (5 years – 11 years), 84 (63%) are in a regular education program, 73 (55%) are in a special education program, and 73 (55%) report using resource assistance. 32 (24%) participants are in all three types of programs. Additionally, 6 participants are also in an honors program. 14 (11%) of these participants report no school difficulties. 85 participants (63%) experience processing difficulties, 89 (66%) experience attention difficulties, 82 (61%) experience learning difficulties, 51 (38%) experience behavior difficulties, and 58 (43%) experience impulse control difficulties. Of the 120 (89%) participants that reported any difficulty, 10 (8%) reported only one difficulty, and 92% reported multiple.
Of the 36 participants in a school program (12 years – 17 years), 25 (69%) are in a regular education program, 22 (61%) are in a special education program, and 21 (58%) report using resource assistance. 8 (22%) participants are in all three types of programs. Additionally, 5 participants are also in an honors program. 0 (0%) of these participants report no school difficulties. 23 participants (67%) experience processing difficulties, 24 (67%) experience attention difficulties, 30 (83%) experience learning difficulties, 9 (25%) experience behavior difficulties, and 16 (44%) experience impulse control difficulties.
Takeaways
- 30% – 50% of participants qualify for a diagnosis of a developmental delay at some point during childhood.
- GDD and ID have high overlap with neurodevelopmental disorders.
- Sleep problems are within a “normal range”.
- Older aged participants report difficulties with school and learning more often.
Presenters: Ella Bohlman, B.S. and Lynn K. Paul, Ph.D.
Natural History research helps bridge the gap between patient experience and professional expertise by transforming real-life stories into the empirical evidence that informs medical, therapeutic, and educational care.
Through the Natural History Fellowship, sponsored by NODCC, researchers are working to turn families’ experiences into knowledge that helps professionals better understand the wide range of outcomes in Disorders of the Corpus Callosum (DCC).
This session focuses on early development, including:
– Developmental diagnoses (e.g., ASD, ADHD)
– Diagnosed developmental delay
– Psychological diagnoses
Whether you are a family member, self-advocate, clinician, educator, or researcher, this webinar will provide valuable insights into patterns that may shape early development and long-term outcomes in DCC.