The journey to diagnosis

My son is 5. There's is a long and extensive history of ASD in our family and we have been under the local unit since he was 18 months for speech delay and sensory processing issues. He is high functioning in a mainstream school and I feel this is blocking a diagnosis and the help he and I really need. He has struggled to adjust to formal schooling in year 1. 18 months ago he had the under 5s ADOS assessment and he met the criteria for ASD in 3 out of 4 domains and so they chose not to put him to the diagnostic panel. But with every day that goes by I see more and more symptoms emerging and his class teacher agrees with me. I feel his school is doing the best they can since he has no formal diagnosis. But it's not enough and I'm struggling to know how to give him what he needs. He chews his fingers until they bleed, he flaps and is stimming and dancing constantly throughout the day a, repeating phrases he likes from the TV all the time. very rigid in structure and routine as well as struggling with sounds, tastes and sensation to the point it makes him gsg/sick. He has limited interests and is mathematically very gifted as well as teaching himself Japanese and Russian (spoken and written). I know in my heart. But at these 6 monthly appointments they seem to not be taking on board the history or what I am saying. The services (education and health) don't seem to know what the other is doing and I'm just really unhappy with it all. I don't know where to start in getting my son the help he needs. Sorry this is long but I just have no idea where else to turn. We need help. 

  • If you don't think that you're being listened to then complain and ask for a specialist opinion. We had problems with our local community paediatrician refusing to put our son forward for assessment. We escalated and were referred to a specialist service who had no problem with assessing and providing a diagnosis, noting their frustration that he hadn't been diagnosed sooner given the extent of his manifestation.

  • Thank you for your reply. I think it is time I put something down formally in writing to the hospital trust. We are not being listened to and as time goes on things are getting more difficult for us as a family. The coordination between health and education is shocking too. There seems to be no holistic approach. On one visit the paediatrician literally checked to see if he gave eye contact and could draw a straight line and said see you in six months. The left hand has no idea what the right hand is doing. Weve been at this since he was 1.5 years and he's almost 6 now.