More than 3 years ago I signed Zelena up to be a participant in a study. BIBS (Brain Imaging in Babies study) and STAARS project (Studying Autism and ADHD in at Risk Siblings project). They were searching for babies who were siblings of a child with an autism diagnosis for research purposes.
Eager to contribute and help to research this condition we got in touch with them. So far Zelena has done most studies, I couldn’t do the first one, an MRI scan when I was pregnant with her just because I have metal in my body.
But she has attended to all the scans and studies at the Birkbeck Babylab and at the Institute of Psychiatry, Psychology & Neuroscience .
The study consisted of observations of her playing, interactions with the team, some problem solving games. She had MRI scans, electroencephalogram (EEG), DNA tests, and eye tracking, this last one is done by watching videos.
We don’t live locally and sometimes it felt a bit difficult to keep attending (it is 3-4 hours drive from home) but then we reminded ourselves the reason we decided to do this, and we made the time to go. Except for the travelling bit, it has not been hard on Zelena. She has been happy to comply with most tests, all but on this last one at her 3 year old check-up, she refused to do the EEG. She just didn’t want to wear the helmet. But in the many visits she has done, that was the only time she was unhappy to do something. And I think she was unwilling to do it because she was quite tired.
It has been a good experience, everyone involved has been very calm and patient with Zelena, and they explained to us every step, every test; we felt confident trusting them. After her first birthday we started noticing that she had changed a bit, up till then, she had been hitting her milestones with no problems. And attending to these visits and seeing her reactions to the games she had to do; it made it obvious to us that she is different and that she might be in the spectrum.
This study and project is on-going, if you would like to take part, you can find them on social media: