I have been on the diagnosis rollercoaster for years with ds, so I can sympathise. Some medical professionals just have no idea and can be REALLY insensitive. I would suggest you keep at it and move GPs if necessary. An EPC referral doesn't mean the GP has to sell their soul or make a diagnosis in the truest sense (like ASD for example). They really can say that the patient has "fine motor difficulties" or "possible sensory issues" or something like that. I have used EPCs for the past 3 years for ds and have had different GPs write them (one didn't even request to see him!). All I can say is just keep going - early intervention is absolutely everything! Shades I will PM you - can you clear out your inbox?