Your diagnosis timeline

[muiisal]

I've loved to learn about how long it took others to come to a diagnosis. We are on the path and it feels so slow and frustrating, not only because of time, but because I don't know who to actually approach for diagnosis... My son is 6 and we've just been agreed to assess for EHCP, long history with SENCO in two settings raising concerns. Had private social communication assessment today with a pead. who specialises, and they didn't think it was ASD, so feel like I'm back to the drawing board of not knowing where to 'go' for a diagnosis. Would like diagnosis so I can unlock which schools would be best (and SENCO feels feels that there is a diagnosis to be made)... Would love to know if anyone else experienced this and how they worked around it...?

by the time DS was 2 I felt there was a difference but he was my PFB so I thought it might be paranoia. Although a SALT who referred us for a hearing test at that time also made comments which made me think she saw a difference too. We cleared the glue ear detour around 3.5-4 about the same time as we saw another SALT about eating issues. She suggested (not strongly) that we might consider a social and comms assessment. We weren't ready to hear it and were worried about labelling do we took him to a private paed. He said absolutely no chance of ASD although we couldn't understand how he could say that as his assessment had been very cursory. More comments from nursery teachers and the SALT who had seen him at age 2. But we were managing ok so didn't understand the need for a label. School started ok but over time things went wrong. We got back in touch with the SALTs we had spoken to years before who helped us through the paediatric diagnosis route (as they had lots of evidence gathered over years) rather than through CAMHS. DS was diagnosed at 7. The signs were there from when he was 19 months but I just didn't understand the significance of them then. DS is bright, has friends and makes eye contact. I think we would be in limbo still if we'd been forced to go through CAMHS. Hang in in there. Just gather lots of evidence and get informed to present your case well. No one wants to mis-label a child so that means it takes ages until they feel able to give a diagnosis. It's a tough road. Good luck and I hope you get there fairly soon so you can move on. Diagnosis changes very little but it will help you advocate more effectively.

Problems as soon as DS started Reception. DS's community paediatrician (referral by GP backed up by school) did not think he had ASD. At first I didn't press the point very much because the ADHD and dyslexia labels hadn't helped so I thought, what's the point? Went to dyslexia tutor who said he isn't dyslexic, he's autistic which tipped me over the edge somewhat (I had tried so hard to get a tutor). Went back to paediatrician who dug his heels in but referred us to St Thomas's Hospital for a second opinion. They diagnosed ASD when he was 8. So it took 3 and a half years. With hindsight, pre-school, the signs were there but I was unsure due to all the boys are different/everyone develops at a different rate/you just don't discipline him stuff. He was also my first child and I had no experience of how children generally behave beforehand.

Noticed issues when DS was 3 but i put it down to behaviour.
As soon as DS started school it was horrendous and he was out of control at school and home. He was referred to EP, school nurse and behaviour service in October 2009. Full time 1:1 support was put in place. Referral to SALT in February 2010. Advised to request ASD referral via GP in February 2010 and DS was referred to the pathway. School applied for a Statement in June 2010 and he was awarded 27.5 hrs in October 2010. In December 2010 we moved to another county. I went straight to GP to be put on local ASD assessment pathway. DS was fast-tracked as his needs were so severe and finally diagnosed in May 2011.
Judging by some of the waiting times others have reported we went through the process very quickly.