Son referred to the ASD pathway, how long?

Hi everyone,

Just looking for some input from your own experiences. My son who's 6 and in year one in school was referred to the ASD Pathway in August 2017 by our GP. We got a letter in October 2017 to say the waiting list is 12-18 months long with an attached leaflet to help us in the meanwhile. I work with children with Autism so I can deal with my son very well and don't feel like I struggle with him, however I do worry about him. He is high functioning and incredibly intelligent and speaks very well, if anything he speaks more like an adult, however he does stand out from his peers and he is starting to realise himself that he is different. He is overly friendly and will happily tell a perfect stranger exactly where he lives. By the time he is on the pathway he'll probably be close to going into juniors and then by the time he gets a diagnosis he'll be close to secondary school age which is a massive worry for me as he'll more than likely need support with this transition.From what I hear at work, I feel like children are being diagnosed left, right and centre pretty quickly and I feel like I'm sitting in no man's land waiting for an appointment. Has anyone else experienced this? I think I just need someone to tell me I'm not alone in this long journey to diagnosis.

Than you in advance.

  • There is a long waiting list for everybody.

    I am an adult and also waiting for diagnosis.

    I was told that they have a very long waiting list.

    Everybody has to wait their turn. You cannot simply jump the queue because you think your child is special. You have to wait patiently. We are all humans and have the same rights.

    I have suffered so much until I realized that I am most likely autistic.

    It is also a massive worry for me as an autistic adult to wait two years to be officially diagnosed.

    I am still working hard to get the support I need and the official diagnosis would really help.

    You are not alone in this long journey to diagnosis.

  • Hi

    No your certainly not alone.

    Its been 2 years since my gp referred me to a paedetrician regarding my then 7 year old son. We are no where near even going down ASD assessment route as school are not in agreement therefor the paediatrician can not move forward. Here on Scotland we need 3 professionals to agree including the paediatrician that there’s enough behaviour traits to warrant an assessment. 

    i am trying to contact the paediatrician regarding next appointment as it’s been well over 6 months since she last saw us and I’m concerned we have been forgotten about.

    Im not very assertive but I really need to push now as time is going on and I was told that there was at least a two year waiting list once on the pathway, I feel two years has already been waisted for us.

    I have kept a journal of behaviours and have also started discreetly videoing certain behaviours that my boy does such as ‘hand flapping’ etc that I feel are worth show8ng the Dr at my next appointment.

    i completely understand, this journey is long and difficult. X

  • I believe it's where you are in the country which determines how long you are assessed. So for argument sake London would be quite long due to its population. I live in the Midlands and from when I saw my GP and when I got my appointment date it was about 15 months. I went back and forth for about 9 months and finally got my diagnosis 3 months later. This was with Northamptonshire Trust who can I say was fantastic from start to finish.

  • I'm in East Midlands and the whole process has taken 18 months for my son. He is 3and a half now. So I agree it depends where you live. 

  • We are in the SW of England and my son has just received his diagnosis. Original GP referral was submitted May 2016 at request of school. Luckily my son's school is really on the ball and had plenty of agency reports already in hand. Educational Psychologist, Communication & Interaction Team, Speech & Language, EHCP, etc and its still been a long journey. GP May 2016. Specialist Team confirmation Aug 2016. Paediatric assessment Feb 2017. Waiting List......... ADOS Feb 2018.