The Canadian Infant Sibling Study (CISS) is a prospective longitudinal study of the earliest sign of autism spectrum disorder (ASD).
The Canadian Infant Sibling Study (CISS) is a prospective longitudinal study of the earliest sign of autism spectrum disorder (ASD).
The Infant Sibling Study had 4 main goals:
Identify early signs/trajectories of ASD
Provide data on recurrence rate in families
Advance understanding of core mechanisms of ASD
Evaluate efficacy of early intervention
The Infant Sibling Study followed two groups of families:
Increased likelihood families: families with at least one child diagnosed with autism, which increased the genetic likelihood of an autism diagnosis in younger siblings
Lower likelihood families: families without a history of autism, which placed younger siblings at a lower genetic likelihood of an autism diagnosis
Families were enrolled in the study when their child was between 6 and 12 months old. Children came into the clinic several times in their first 2 years, at 6, 9, 12, 15, 18, and 24 months of age.
During these visits, children played with experimenters during several assessments, including the:
Autism Observational Scale for Infants (AOSI), which looked for social features of autism, including responding to name, smiling, babbling, eye contact, etc.
Mullen Scales of Early Learning (MSEL), which measures spoken and understood language use, gross (sitting) and fine (grabbing) motor scales, and visual reception.
Vineland Adaptive Behaviour Scales (VABS), which is a parent questionnaire that measures adaptive behaviour (behaviours necessary for living independently, e.g., dressing oneself).
The study took place at three sites across Canada:
A note about these publications:
The language landscape surrounding autism spectrum disorder is ever evolving. The terminology used within the presentations below are a product of their respective times.
As we learn better, we do better.
The rate of autism diagnoses in boys compared to girls in our longitudinal cohort was 1.65 boys for each girl. This is lower than expected from previous clinical and epidemiologic samples, which have noted a diagnosis rate of 4 boys for each girl (4:1).
Differences in cognitive ability between boys and girls with autism were similar to those of infant siblings without autism and boys and
girls from families without a history of autism.
The modestly higher rate of autism in boys, combined with the relatively high cognitive level of our diagnosed siblings suggests that we are identifying an unanticipated number of girls with lower support needs in our increased likelihood sibling cohort.
These findings raise interesting questions about how children with autism from sibling cohorts may differ from those who are clinically referred.
Read the full article here. (Access may be limited)
We examined the emergence of autistic-like traits in non-diagnosed infant siblings of a child with autism. We identified two groups of non-diagnosed siblings:
One group had higher rates of autistic-like traits compared with the other group. At age 3 years, these children had more social-communication differences, lower cognitive abilities, and more internalizing problems (e.g., anxiety).
The other group of non-diagnosed siblings more closely resembled children from families without a history of autism.
Study findings suggest the emergence of autistic-like traits resembling a broader autism phenotype by 12 months of age in approximately 19% of infant siblings who did not meet autism diagnostic criteria at age 3 years.
Read the full article here. (Access may be limited)
The diagnosis of autism, when children are referred to specialty clinics by their community health care provider, is remarkably stable with age.
The Baby Siblings Research Consortium (BSRC) sought to determine if diagnoses of children recruited through baby sibling research programs are stable.
The stability of autism diagnoses based on assessments at 18, 24, and 36 months of age were evaluated. Overall, 93% of siblings diagnosed with autism at 18 months, and 82% of those diagnosed at 24 months retained their diagnoses at 36 months. However, there were many children who were not diagnosed with autism until 36 months of age.
Overall, the stability of diagnoses was comparable with children who are diagnosed in the community. Importantly, the results of this study suggest that assessment for autism may need to be repeated if referral at an early age does not initially lead to a definitive diagnosis.
Read the full article here. (Access may be limited)
Parents are a great source of information concerning their child’s development. The Infant Sibling Study researchers sought to determine if the types and numbers of concerns parents reported could predict later autism diagnoses.
Parents were repeatedly asked if they had any concerns about their child’s development from 6 and 24 months of age.
Parents of children who were diagnosed with autism at 36 months reported more sensory (looking at fans) and motor (late to sit, crawl) concerns at 6-9 months of age and more language (few words) and social (plays alone) concerns at 12-18 months of age.
The results of this study suggest that parents have valuable information concerning the development of their child and that these concerns should be reported to their family physician or paediatrician.
Read the full article here. (Access may be limited)
Sensory interests are different in children with autism. Parents responded to a series of questions concerning the sensory interests of their child.
From the responses parents provided on the questionnaire, it was noted the younger siblings of children with autism were more likely to report differences related to auditory processing (e.g., not noticing a loud bang).
In addition, younger siblings of children with autism were reported to be less likely to notice sensory stimuli (e.g., someone speaking to them) than children of families without a history of autism.
Sensory differences has been included as a diagnostic criteria for autism since 2013 (DSM-5).
Read the full article here. (Access may be limited)
Visual inspection during reaching and grasping of small, easily graspable toys was examined in siblings.
Between 6 and 9 months of age, all children showed similar visual inspection of toys. Interestingly, at 12 months of age, siblings that will go on to be diagnosed with autism begin to look different from siblings who would not be diagnosed, in that they continued to look at
grasped toys for a longer period of time compared to the other children.
The continued looking at toys may impact play: unlike the non diagnosed siblings, who look to other toys to grasp (such as another block to
begin a tower), siblings with autism appear to stare at grasped toys.
This staring continues to differentiate siblings with autism from those without autism at 15, 18, and 24 months of age.
Sensory differences has been included as a diagnostic criteria for autism since 2013 (DSM-5)
Read the full article here. (Access may be limited)
Children with autism often have trouble with becoming ‘stuck’ when looking at objects in the environment.
We were interested in the relationship between visual orienting (looking behaviour) and emotional distress in infant siblings.
Infants completed a task at 6, 12, and 18 months that assessed how long they looked at pictures that appeared on a computer screen, even when a second interesting picture appeared.
Baby siblings, at 12 months of age, who became stuck on looking at the first picture when the second appeared were more likely to receive a diagnosis of autism by age 3.
In addition, prolonged looking at the first picture was also associated with emotional distress reported by parents on questionnaires.
Read the full article here. (Access may be limited)
For parents of young children with autism, early communication differences are often among their earliest concerns.
In this study, we looked at how early communication predicted outcomes at age 3. Differences in the development of words and gestures predicted a diagnosis of autism.
Differences in communication growth rates over the first two years of life predicted not
only autism but language disorders as well.
We also found that a lower number of gestures used by the time the infant is 12 months old (like pointing) was also associated with an autism diagnosis by age 3.
It is important to monitor the spoken language and gesture use of infants at increased likelihood for autism
Read the full article here. (Access may be limited)
Adaptive behaviours are the skills a person needs to be independent as expected by their age (e.g., putting on clothes). Delays in these skills can limit functional outcomes for people with autism.
We were interested in looking at the development of adaptive behaviours in babies who had an older sibling diagnosed with autism.
Parents answered questions on several areas of adaptive behaviours (social, communication, daily living, and motor ability) when their baby was 12, 18, 24, and 36 months old.
Babies who were later diagnosed with autism at age 3 showed smaller gains in adaptive behaviours at each time point compared to the non-diagnosed babies and their abilities were related to overall developmental level and autism symptoms.
Understanding differences in adaptive behaviour is important for improving outcomes in children at increased likelihood for an autism diagnosis as adaptive skills can be taught and can be a target for intervention.
Read the full article here. (Access may be limited)
Parents of children with autism often report that their child experiences challenges regulating their emotions.
We wanted to see if measuring how infant siblings of children with autism act and respond in social situations could help identify those who later are diagnosed with autism.
Caregivers filled out the Brief Infant-Toddler Social- Emotional Assessment (BITSEA) when their child was 18 months old. Since most children with autism are diagnosed after age three, the study team wanted to see if the 18-month BITSEA scores could predict which children would be later diagnosed with autism.
The results suggested that the BITSEA was good at identifying behaviours that were characteristic of autism. These results show that the BITSEA may be helpful for identifying symptoms in children who have an older sibling diagnosed with autism.
Read the full article here. (Access may be limited)
Our group developed a new screen for early signs of autism called the Autism Parent Screen for Infants (APSI). Parents completed the APSI at different time points in their child’s first 2 years of life.
Scores on the APSI were compared for children who were diagnosed with autism and children who did not receive a diagnosis of autism.
The total score on the APSI was able to differentiate between children who were diagnosed with autism from those who were not diagnosed with autism at age 3, starting from 6 months of age.
This study highlights the potential of the APSI as an early screening tool for autism for infants who have a family history of autism.
Note that APSI is now referred to as PROCESS (Parent Reported Observations of Communication, Emotion, and Social Skills)
Read the full article here. (Access may be limited)
What do symptoms of autism look like in younger siblings of children diagnosed with autism?
The Infant Sibling Study team created an observation assessment, the Autism Observation Scale for Infants (AOSI), to monitor signs of autism in younger siblings of children with autism from 6 to 18 months of age.
At age three, all of the children had an assessment to identify the younger siblings who met (and did not meet) diagnostic criteria for autism.
Scores on the AOSI were analyzed to determine if the signs of autism identified by the AOSI could be used to help kids be identified at an earlier age.
When children were assessed at 12, 15, and 18 months of age, the AOSI showed promise in distinguishing between children who had autism.
This result suggests that differences between infant siblings who go on to receive a diagnosis of autism may be observable by their first birthday and include differences in eye contact, babbling, responding to name, insistence on a particular object, and ability to transition between activities, amongst others.