Rejected for assessment

I went to my dr a month ago to see about getting diagnosed as being on the spectrum as i struggle a lot and since my youngest was diagnosed with autism i now know that i am on the spectrum too.

Wrote a big list as i struggle with communication, took my husband in with me for support and also wrote down my aq score of 43.

Today the dr has said the autism team do not want to see me as they dont think i have autism, how can they judge this without seeing me, the dr kept saying that they were the autism experts and they would know, i can not believe they dont want to see me, i listed all of my issues/problems down and just dont know where to turn to next, the dr gave me an option of going private but as i understand it a diagnosis private is not regonised on the nhs?

The team had also said they dont take into account the aq test, surely that should give an indication that someone should at least be assessed, just feel like i am completing wasting my time

Can anyone advise what should i do next?

  • I had an assessment and after pouring out all my struggles and finding it so hard I was told I don’t have autism because I went to a coffee shop with a friend. It was awful to hear. I’ve told many people since and they are shocked. 

  • I did an autism test with my doctor and suspect I have Asperger’s and the test showed I indicate that. Was referred to the NHS Autism team and had a rejection letter today. Feel let down by the system. What do I do now and how do you afford private?x

  • In my local health area in NZ their arbitrary cut off was of the person was in employment or education, they were not severe enough to warrant assessment for either ASD or ADHD.

    I wrote a detailed rebuttal based on and citing the national guidelines for screening and then pointed out that implicit in this was the encouragement for SD20 quit her job.

    The psychiatrist who saw her admitted to me I had been completely correct in my insistence over the need to assess.

    We went private with SD16, because the waiting list for adolescent mental health in a city 5 years post a major natural disaster (earthquakes) is too long unless the kid has major risk factors for suicide or psychotic symptoms. She had been triaged at 13 as having no significant problems based on an 15 min interview with her mother present saying she only exhibited anxiety in relation to her father...we didn't want to put her through a triage again

  • Good to here from you Hendrow. I'm frightened by the idea of assessment because of cases like that. Hold tight and appeal x

  • Hi InfinityPink.

    I would ask the GP on what grounds they think you are not autistic.  If you have put a strong case together on why you think you are autistic, unless I you have a justified explanation on why they think otherwise, I would be left feeling fobbed off in your situation.

    I'm starting to realise my referral process was much more straightforward compared to some on the forums.  If you know a diagnosis will improve things and if you have had numerous misdiagnosis or no diagnosis in the past in relation to mental health problems or underlying day to day struggles, then it might be worth persevering. 

    If I was presented with this situation, I would want to know more about why I was not being referred for a diagnosis.  If the explanation was logical, then that in itself could shed some light on your concerns and why you struggle with certain things.  Sometimes it helps to know what you don't have to understand what could be the cause.

    Hope that helps.

  • I'm the same age as you (aq score of 46).....raised the possibility of an assessment with my GP...who now wants to test my thyroid as the reason behind my anxiety....but I know that I am autistic...

    hang in there girl!

  • It seems like it is a lottery out there, and I am not a gambling man!

  • That is shocking, any update, InfinityPink?

  • Hi as you have a diagnosis for your child ask what you should do through that specialist. We had to be allowed to seek diagnosis through the funding authority for our region as they had no assessment centre so had to choose whether we had a case to be funded for assessment outside our NHS region. Had to do this for follow up appointment after assessment diagnosed my son at 24. It took a at least a year and then over six month the second time to be funded out of area, exhausting ! Keep going you need to understand you and your child . 

  • You can also request details of this "autism team".  They might be anything. The reason they don't want to see you is because this autism team is one that normally doesn't do diagnosis. So it wouldn't be in their remit.

    If you have asked for the diagnosis and the GP has given you this story, find out where your local or nearest autism diagnosis centre is and explain to them what has happened.

    We are assured by Government in the last year that adults would not be prevented from referral for a diagnosis.

    Unfortunately far too many GPs are prevaricating. Perhaps they think it will be a heavy cost charged back to them. Whatever, the way adults are being misled about their apparently upheld rights to a referral is shocking.

  • I think you can ask for a second opinion the straight away. Don't think there is any time scale.

  • Is there any time limit after diagnosis when our can seek second opinion?

  • Don't take no for an answer!  Your GP's attitude sounds completely unacceptable, for eexactly the reasons you're giving.  I would consult a different GP and also consider making a compaint about your current one.

    Whatever you decide to do, good luck with it.

  • Also, IntenseWorld did an excellent post on how to get a diagnosis...

    http://community.autism.org.uk/discussions/health-wellbeing/diagnosis-assessment/guidance-adults-assessment-diagnosis-through-nhs

    Take your time and look at the information and raise any questions here and we will try and help you get through this.

  • Hi InfinityPink,

    The AQ score is trusted by a lot of doctors as evidence that you warrant investigation. It isn't evidence as such but it points people in the right direction.

    You are entitled to a second opinion see http://community.autism.org.uk/search/node/%22second%20opinion%22

    You might consider finding a GP that knows something more than nothing about autism. your current GP seems to lack awareness.

    A private diagnosis can be trusted if it is from a reputable specialist. I was referred privately by my GP and have had no problems with my diagnosis being recognised. If you pick a random service off the internet you may not be so lucky.

    Don't give up but don't get obsessed by this. Be calm, read up on the procedures and keep going, you will get there.