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Seriously, how long should a diagnosis take?

Silly Sally's picture
Silly Sally

Seriously, how long should a diagnosis take?

Mon 23 Nov 2015 10:07pm

Well, just thought I would give a little update (lack of) we still don't know if the first born is on the spectrum or not. I really thought all the assessments would be finished by now, I've read that some people have an answer in months and this has been going on for years. The school are using the term autism in relation to him now but I'm not convinced that he will get a positive diagnosis. The ADOS was months ago now and we haven't had any feedback other than "he did really well actually" as he was handed back to me. I don't even get stressed about it anymore, however I am getting concerned that secondary school is fast approaching and that is making me feel very very uneasy.

Has anyone gone through years of assessments and come out with a negative dx? What happened after that?

Sally xxx



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  • NNatalia89's picture

    Hi. "Years of assememt"??! I've been trough 3 assessments personally. 1 for each of my boys. Older one has waited 7 months for 10 weeks multi panel assessment and got diagnosis at the end of last appointment. My younger one has waited around 6 months for 1 appointment assessment and he got diagnosis same day at the end of it. My diagnosis (adult version): I was waited around 3 months for 1 day assessment, and got my diagnosis (with report) around 4 months later. Now my brothers son is within process. His school is about to make observation & send their report until March (so they have 6 months for it) and then he's about to have one day assessment up to 6 months from March. So as u see I have never heard /or had to wait for diagnosis more than 1 year. I would definitely rush up who ever should be responsible for things move forward!

    Autism. It's not a processing error. It's a different operating system.
  • JuliaM's picture

    Hi Sally

    I first went to the GP with concerns about my daughter in October 14, I saw a pediatric consultant in January and then again in June. He said that my daughter has high functioning autism and he was refering her on to the correct department for an assesment. I haven't heard anything as yet. Is very frustrating. I'm not coping to bad at the moment but at the but there has been times that I've been desperate for help and its not very forth coming. 

    I also don't know if this time scale is typical. x

  • NNatalia89's picture

    Hi Julia. As far as I know u count waiting time for assment since referral from peadiatrician in June in your case. Depending on where u are it's takes between 3-12month wait for the date. U should get letter around 2-3 weeks before hand. Hope that helps.

    Autism. It's not a processing error. It's a different operating system.
  • Silly Sally's picture

    Yeah, years! We initially went to a GP when my son was at the end of his reception year at school, which would have been 2011. We were referred to CAMHS and had an appointment with them in 2011 when he was in year one. No further appointments took place. In 2012 I went back to the GP and we were reffered to a Paed who we have seen on approx 6-7 occasions including a home observation and then a school observation. When he was in year 3 at school we had a speech and language assessment both in a centre and at the school. We self referred back to CAMHS and saw someone from their 3 times, plus another school observation. In July 2014, CAMHS  reffered us on to the SCAT team. They have seen us in a centre, have observed him at school, carried out an ADOS assessment, visited us at home and had an additional 2 appointments just with myself to collect information. Last year when he was in year 4, OT came into school and saw him on several occasions as did an ASD advisor from the LA. Now SCAT have carried out half of a cognitive assessment and need about another hour to finish it and I assume that we will then be called in in January 2016 to get the results!

    I don't think our experience is typical as I know two other families in the area who have gone through the process. One took about 8-9 months and the other about 6. I do think things will vary regionally as well, especially as we live in a quite rural area. I used to get really stressed about this but he seems quite settled atm. I've got a feeling that they will say he is not on the spectrum and just has traits and in which case I hope they can point us to some help because I've bitten my nails off just thinking about secondary school as primary has been traumatic and he's already a target for bullies! Could do with a lottery win so I can afford to give up work and home school him and his brother and sister! 

  • SherpaMum's picture

    My son took 18 months for diagnosis and this seems typical time here. He did really well on his ADOS a and that showed no ASD.  He is high functioing and now has a diagnosis.

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