Yeah it's hard not knowing everything about it, we got a leaflet on it and what children with it can have, we did see a genetics team and they signed her off but we can go back if she gets worse, because she's not severe with it they didn't need to see her anymore, she just told us they used to test the parents to see if it came from a parent or not but they don't do that anymore she couldn't really tell us anything definite as they're still learning about it themselves constantly so it didn't really help tbh, but this could be different for you of course! My daughters temper is through the roof and she's on a wait list to be seen by the asd team, luckily we have had an amazing team around her and her nursery ate amazing and know what to do to keep her from having meltdowns etc, I'm dreading when she starts reception but she has another year in her nursery yet and the paediatrician she sees has sent them a letter through to make a plan on what they can do to support her. I've applied for DLA and on my 14th week of waiting so haven't heard anything yet but I did send a copy of the letter with diagnosis of her genetic condition in with some other stuff. It's so hard though to get other people to understand it when we barely understand it ourselves 😬