Declined an assessment...

Hey guys!

I find myself here again looking for advice.

I was referred for an Ausmtism assessment back in July, was sent some forms in August... and finally heard back a few days ago saying that, although I'm "clearly struggling in some areas, [they] don't think I need an assessment at this time." Despite having sent a whole other document full of traits, that I feel point towards me being Autistic, as I couldn't fit everything on the form. Apparently my form didn't show *enough* traits...

I feel quite downhearted, and like I've been completely dismissed. I've don't a lot of reading up about Autism over this year, and I don't think I'm wrong in this.. too much of my life experiences now make sense under this lens for me to want to just let it go...

I have put in for a 2nd opinion, but my appointment isn't until mid January...

I've never had to do this before...

And I'm worried that it'll just get me nowhere again, though I'm gonna keep trying... the message my doctor sent when suggesting a 2nd opinion said about maybe looking privately... would they refer me for such for free, or do I have to pay in that case?

Has anyone else been through similar?

What did you do in the end?

  • That you have taken lots of clinical tests that strongly suggest that you are autistic, that you have researched the diagnostic criteria for autism and feel that they are a very strong match for your own traits and history. That, despite this, you have been denied an assessment for reasons that you do not understand and have not been cogently explained to you and that you feel that you are being unfairly denied clinical validation of your autistic status. A clinical diagnosis that you feel is necessary for your wellbeing, and that will give you access to resources and accommodations that will considerably improve your day to day problems and life generally.

  • Hmm.. hadn't considered that last option.

    What would I even say, though? 

  • Short of paying for a private assessment, it looks like you have done everything that you can. However, making yourself a thorough nuisance to the people blocking your access to an assessment, plus contacting  your MP, might produce results.

  • I did do a bunch of tests that I found on the Embrace Autism website, and scored above the threshold on all of them.

    Then had me do the AQ-50, and RAADS-R as well before deciding whether to access me or not.

    The seperate document I sent with traits that I have did cover pretty much everything, at least in the DSM-5, I feel like.

  • Yeah, I see where you're coming from..

    I tried to right to choose thing, and none of the places in my areas right now are accepting referrals that way anymore, as they're under too much demand, sadly.

  • For example commissioners in North Yorkshire have introduced a new policy whereby:

    "adults who approach their GP seeking an autism and/or ADHD diagnosis will be refused access to assessment unless they meet one or more of the following criteria:

    1. Immediate self-harm or harm to others. A mental health assessment must have been undertaken and a crisis management plan in place.
    2. Risk of being unable to have planned life-saving hospital treatment, operations, or care placement
    3. Imminent risk of family court decisions determined on diagnosis e. g family breakdown, custody hearing"

    That’s so unfair! It means many of our autistic community members will not have access to confirmation of their own identity.

    I obviously understand why though as the NHS is overstretched.

    Also, it perpetuates the cycle that happens when many autistic people are only identified when at crisis point and therefore associate their autistic experience with distress.

  • If you have not done every autism test available (AQ10, AQ50, RAADS-R etc.) then do them, the results will be useful ammunition. Also look up the autism diagnostic criteria in the manuals (ICD-10 and The DSM-5), make sure that you have examples of traits and experiences to cover all the required criteria. Just be very thorough.

  • ive been waiting years myself.... but now i think on it more i dont think i care about getting assessed anymore.

    sure the protection could be helpful, but im pretty sure being diagnosed likely has alot of downsides anyway and im thinking with any diagnosis like this the gov could very easily one day use it to asset strip you... and thinking of that and of my opportunities i can create for myself i think now a diagnosis may run against me anyway as i realise to get by in life you need assets because money is actually without any value at all and only gets its value from assets anyway, so you need to really horde and attain a wealth of assets and investments instead of cash... but like i said, if you have any diagnosis the government can steal your assets at any time claiming they can take it all for your care or taking it whenever they decide you need a guardian lol

    so yeah, im not too bothered about it myself as i now see alot of downsides to any such diagnosis that would give the government too much control over my life and powers to steal real wealth off me.

    but yeah you can get around nhs refusal by requesting the right to choose thing, because a private diagnosis paid for by nhs wont turn you down as private never turns down business.... only free health care and socialist style public care would turn people down as theres no profit to it... and no profit for them means no reason for them to do it. its one of the failings of socialist ideas, it fails to understand humans have needs and greeds and wont just do things for nothing, even the best of people will want to gain off doing stuff for you.

  • The NHS is in crisis and pressures upon diagnostic services have been increasing in recent years. I have seen mention on here of people being told that waiting lists are in excess of 5 years. The NHS have increasingly been subcontracting out to private providers to try and reduce lists. Additionally people seeking diagnosis have increasingly been asking to be seen through the 'right to choose' route to reduce waiting times.

    The effect of all of the above is that commissioners are trying to solve the 'problem' using various methods, one of which is restricting access to diagnostic assessments. It is unfortunately a postcode lottery and people in some areas will have a much harder time than others. Essentially it fundamentally is about saving money, like most things in the NHS.

    For example commissioners in North Yorkshire have introduced a new policy whereby:

    "adults who approach their GP seeking an autism and/or ADHD diagnosis will be refused access to assessment unless they meet one or more of the following criteria:

    1. Immediate self-harm or harm to others. A mental health assessment must have been undertaken and a crisis management plan in place.
    2. Risk of being unable to have planned life-saving hospital treatment, operations, or care placement
    3. Imminent risk of family court decisions determined on diagnosis e. g family breakdown, custody hearing"

    https://community.autism.org.uk/f/introduce-yourself/33844/hello-from-yorkshire/323261#323261

    Perhaps that's what they meant by 'at this time'. They are waiting for you to reach crisis point first, in a similar way to how most of NHS mental health services operates. All you can do is keep fighting and try not to take it too personally. The system is broken Pensive

  • Yeah =( probably as you and others say, and they're being super picky.

    Fingers crossed!Fingers crossed

  • This certainly sounds like autism, I'm not sure how that wouldn't need an assessment.

    Perhaps the second appointment in January will get further.

  • On the main form itself, it was asking mostly about struggles with socialising/communications, and sensory troubles, plus ofc family history and stuff. So I explained how I've always atruggled to fit in, often was bullied because I didn't, difficulty making and maintaining friendships. Struggling with small talk, difficulty with eye contact (I can make it, but I have to force it), delays in processing what I'm being told, trouble with figuring out my turn to speak in a conversation.

    Sensory overload related to sound and fabrics, struggling with food textures, meltdowns and how they affect my mental health, etc. Stress when routines change if I'm not wanted and allowed time to get my head around it...

    And because a lot didn't fit anywhere, I also sent a document detailing more of my traits, as well as a lot of things that are repetitive behaviours and such. Difficulties with proprioception, as well. 

    They're what I have off the top of my head anyways.

    The forms I filled in was the Empathy quotient one, and one asking questions about my history, experiences, struggles, etc.

  • What are the traits that you have? What forms did you fill in?

    Like others have said, there is a massive increase in adult diagnoses occurring and with the system being under strain, they may be trying to discourage diagnosis if it stops waiting lists getting bigger. That may be an unfair accusation, but let's face it, the NHS is imploding. I've had to fight for months to get very basic scans for genuine physical medical issues which cause me daily agony, when in other countries such a scan would occur within a week.

    The pre-assessment for an autism diagnosis is typically not done by a doctor or qualified psychologist, it's usually a nurse. But they'll have usually done it a lot of times before, their job is to weed out the obvious non-cases, and put through anyone who could be autistic to an actual assessment.

    Even if not autistic, if you have troubles and "struggling in some areas", they should be explained/diagnosed, and you provided with the help you need, but we don't have a real mental healthcare system in the UK. They usually wait for people to reach breaking point and then find a way to get you out of the system ASAP.

  • Aye, agreed =/ maybe it's like an above reply says... "although your struggling ... not at this time" because they're trying to get through more severe cases first? =/

    Feel free to "babble on" all you like, I don't mind!

    Sorry that you've had such a rough ride with them =( it's not good enough at all!

  • They said ( and i quote ).....
    [they] don't think I need an assessment at this time." 
    Really ?
    So at what time DO They think you will need one ?
    I know how the whole system works,have been  through the whole mentai health system for 8 Years.
    They tick boxes then forget you untill your next appointment.
    They never listen and they mis-quote you the next time the see you.
    Any errors on their side are deflected back to YOU to cover their ows A...S. " Their favorite  saying  is "You did not engage "
    I told my last O.T' s two weeks ago to  forget it.
     I won't babble on but just to say that a complaint is in progress.
    We NEED help, not substitute jobsworths..


  • Yeah, that did cross my mind...

    I know they're very very busy, and overworked... they need more funding and staff/help that they have.

    But I also just feel its unfair to dismiss people who very much could be. Surely it's better to assess and offer help, than let someone hit burnout levels, and possibly require even more aid, benefits, etc. Before they get assessed/help.. 

    Yeah, I'll try and remember to ask about that when my appointment rolls around.

    I'll also reach out and ask the gateway I was referred to why I was dismissed.

  • That could be an option, but at this point I'm not too sure I trust my current GP practice knows enough about it overall to give me much help. When I initially called to start the process, the doctor I spoke to was awful; told me it's impossible because my parents didn't show concerns, and because I'm doing "well" in life (husband, job, etc).. how "he's the doctor, and he's been trained so he knows what he's doing!". It's only because I had a list of traits prepared to help me in the first place, that I got anywhere.

    I did wonder a bit today if, maybe because I've not been to the doctors before about my mental health, I've no trail of sorts to show that I've has struggles for a long time. But that's only because I was too embarrassed in the first place, and I cannot verbalise my struggles well, I do better when I can write it out... but then also worry that  because I've not been taken seriously for physical ailments in the past they certainly won't with mental health stuff that I can't prove..

    I found that overall I could fill the forms out OK, I gave a lot of detail in most areas. More so than my friend/husband gave on theirs.. 

  • I'm sorry you're going through this.  There is a diagnostic crisis in this country at the moment and wait times are horrendous.  It might be that your local service is trying to tend to only those it sees as most urgent and most likely on the forms to be autistic.

    You could try writing to them again and asking them whether they had considered any points you feel they've left out.

    I would contact your GP for clarification of what he meant.  Most probably he is suggesting you go private.  He could write a supporting letter for this, although most people self-refer.  That's what I did.

    It's awful really.  This is putting you under stress because the system is under stress.  

  • Sorry to hear that you've been denied am assessment - I have been through similar, but managed to get assessed and diagnosed a couple of months ago.

    What happened with me is that initially my GP sent the referral forms for me to fill in on my own with no help from the GP.
    I was already in a pretty bad place in terms of ongoing physical & mental health problems and just couldn't even start to fill the forms in, so just forgot about it.

    I was known to / under the care of local adult mental health and one of the support workers sat down with me to go through the forms. She was absolutely useless - was unable to offer any contect around each of the questions. In fact I got the impression that it was the first time she'd seen any of the forms**
    The froms were sunbmitted the ASD team and promptly rejected.

    Some months later after another mental health issue, a different support worker offered to go through the forms with me. This time I was fortunate that he knew what he was talking about and took his time walking though it with me. 
    TBH, I wasn't expecting to be accepted for assessment (after the first knock back), but fortunately they did accept this time.

    Could you ask for help with the forms? 


    ** Having been involved with local mental health services for several years (as a patient) it seems that the vast majority of staff are pretty much useless. That is unless your talking about qualified psychiatrists / psychologists. The support staff are probably not very qualiified and are on minimal salaries, so I guess its a case of if you pay peanuts then you get monkeys!