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Strange rejection for diagnosis - referred to "other professionals" - if they suspect autism then they'll assess.

Tarknassus

So back in 2019 I started the journey to getting a diagosis.  It took ages to get the initial paperwork, got it all filled in, added some personal notes along with mood diary to show my feelings as I'm not good otherwise at expressing them.

Nothing for a year.  GP writes them a letter asking what's happening, and they respond back to me with... more of the forms.  So I go through the process again, send them off and several months later:

A letter appears!

"The information you have submitted is not reflective of autism"

Okay.

But here's the really really weird part:  They want to refer me to have "assessment by other professionals" without stating who or what or how.  The close of with "should they consider autism is a possibility we will revisit undertaking a full autism assessment within our service"

So basically I've been fobbed off and bundled off elsewhere (where I don't know yet), and if they say its probably autism then an assessment will be made.

I know the forms they gave me (AQ50) I score highly on.  My documentation went through my life detailing (for want of a better term) autistic-type moments or examples where I seem to have exhibited traits.

The only thing I had concerns with was my parents view of my childhood.  My perception of things and my parents are often two completely different observations.  The fact I had to learn masking techniques because I was born with a mild hearing loss would have easily covered this up.  Learning to 'follow along' with conversation without understanding half the words, things like that.

It completely knocked me.  I manage my life as an autistic would, but I don't feel I can call myself as such.  I've always referred to myself as a 'probably autistic' and used little tips and tricks I've read around the net which have really helped manage my life.  

Obviously I'll be in touch with my GP to find out what is going on now, because I don't know.  If they're referring me to psychiatric services that would be a waste of time as I've already tried that route just prior to looking into the possibility of bein autistic.  I got refused then because despite my mental health issues, I wasn't a "risk" category and didn't score highly enough on their depression test.  Despite struggling with depression for the last 25+ years (it's a persistent cycle).    

Has anyone else been bounced around different departments?   I don't have the luxury of affording a private assessment and we have a singular autism service in Wales.

  • There is a connection with hearing loss and autistic behaviour , it seems to be the lack of early development caused by not hearing language, if a child is brought up in a deaf family it does not happen it is only where a deaf child is brought up in a hearing family.

    Also i am in wales and the autism services seem to be terrible to non existent. I have had my child refused even though his last psychiatrist said in a report he needs to be . And his previous school suspended him saying he was a danger to the other children and staff.  

  • in reply to Anna Mod

    I've tried to call, but the wait times are too long for me (or I've just bottled out because of fear of muddling everything up).  No fault as it's obviously an in-demand system, and tbh I'm just not good on the phone anyway.

    I received a letter from my GP which contained a copy of the letter sent to him.  It was completely and utterly different to mine.  Where my letter stated "The information you have submitted is not reflective of autism", the letter the GP received said the following (changed my name to my forum name for confidentiality):

    "In the information we request at referral, Tarknassus failed to significantly meet the clinical cutoff on the measure designed to gauge evidence of autism in the earliest developmental period."

    It then goes on to detail that "Furthermore, aspects of the qualitative information Tarknassus completed may be reflective of autistic like symptoms having a different cause."

    And recommends a psychiatric assessment to be done before they will entertain any future attempt at diagnosis.

    My GP has made the referral for this and now I'm stuck waiting anxiously for the details on what happens next.  The worst things right now are:  mental health support groups I'm in all tell me my symptoms in day to day life sound like autism.  The autism assessment unit say it's not.  I have no clue how long to wait or what will happen next.  It's exhausting and wearing me down incredibly quickly.

    Finally, if I'd received the letter my GP had explaining in detail, I'd be a lot less stressed.  As it is they told me far less than they told my GP.  

  • Hi Tarknassus,

    Yes, I also went for an assessment with a psychologist covering four separate appointments.

    This was only due to the fact that my son had been diagnosed with Asperger's and ADD, and his mum wondered if a similar diagnosis would explain my little 'isms!

    Even though I've always known I'm different to other people I was still dubious and gave conservative answers, downplaying their severity.

    Her (the psychologist's) professional conclusion was that, whereas I did exhibit many autistic traits, I couldn't be autistic as I was coping without support.

    I accepted her decision but have since discovered that there are a lot of people on the spectrum that can lead independent lives, they just find it bloody hard, which I do.

    So I do sympathise with your predicament. It seems very hard to me to get a diagnosis as an adult due to the fact that we learn to mask our autism very well.

    Good luck with getting the help and support you need. All the best!

  • Hi , thank you for sharing with the community about how your diagnosis journey has been so far. You may like to contact our Autism Helpline team who can provide you with information and advice.

    https://www.autism.org.uk/what-we-do/help-and-support/helpline

    You can call them on 0808 800 4104 (Monday to Friday 10am to 3pm.Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an adviser.

    All the best,

    Anna Mod