I'm a coward

I'm a coward .The question over autism spectrum disorder constantly hangs over me ,but I'm too scared to press for an assessment. Although I have autistic traits I question whether I would meet the full criteria. In fact I fit a similar thing non-verbal learning disorder better. The trouble being NVLD is scarcely recognised in this country . The local autism service doesn't cover NVLD so the fear is the rejection of an autism diagnosis will not result in other avenues being explored. This in turn would cement/strengthen the ignorant and misguided belief that everything relates back to  the mental health diagnosis. Then there is the issue that as an adult there's not much support whether you're on the spectrum or NVLD. It would be nice though to be able to say to all the ignorant f******s it was always much more than a case of being "awkward,demanding and troublesome"

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  • I don't know whether you have decided to take the test but it is obviously something of great concern to you-you just have to stop wasting time speculating on the possible outcome. If you had the test it would solve your to main problems the first of which is your gnawing uncertainty about the true nature of your condition, the test would deal with that-hopefully and if you had something official to refer to and show your family the second problem of support may begin to be addressed.

    At the moment you are in self-imposed limbo, I fail to see how you could possibly function to your fullest capacity with all of the doubt and uncertainty weighing down your every move-the people around you would benefit too because they would get a better idea of how you feel and what they can offer in terms of support.

    I know that people need to know-roughly, at least who they are dealing with, if that person is unsure themselves , it does not help anyone and their patience and willingness to be accommodatng becomes stretched if we are not prepared to put effort into helping ourselves.

    You just have to bite the bullet-whatever the actual reality may be, it can't be worse than walking around in a fog of uncertainty and indecision while the clock is ticking and the more fulfilling, better informed life you could be leading is languishing unexplored.

    Good Luck..

  • Dear firemonkey,

    I am sorry to hear you are distressed by this situation and you are feeling a lack of support.

    I hope you find the following leaflet which you can download from our website useful:

    http://www.autism.org.uk/about/diagnosis/adults/after.aspx

    If you have any other questions, or wanted some advice, you may like to contact our Autism Helpline team. They can provide you with information and advice on your issue. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am 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 advisor.

    Best regards,

    Federica-Mod

  • I think my family knows to some extent even if not fully. For example I got my sister to score me on the RAADS-R at  the aspie tests site and she scored me higher than I scored myself. She scored me lower for language but much higher for the social element. My sister has said that she always thought I was most likely dyspraxic . My stepdaughter is co-ordinating daily living support for me and had to write a description of me. Among the things she said , which I've mentioned several times , is difficulty initiating conversations and making small talk.  I guess I just need one of them to say- "Go for the assessment. We'll support you" as that would make me feel more confident

  • The trouble with that is your family probably don't see the problems that you have. You know them, you are comfortable with them. My mother's take on it "but you always seem so capable" - she couldn't believe that I have big problems in social situations and suffer from severe anxiety .... but then she would never see me in those situations, so there's no reason why she should get it. She sees me at home, comfortable, with few people around me who I know and like, and that's it.

    I would say it is worth pursuing; your last sentence says that you know at the bottom of your heart that you are not just  "awkward,demanding and troublesome", there is a reason for this, all of it, and once you know what it is you can start to understand the reasons and understand yourself better. Yeah, you won't get any support and you won't get any validation. But I can only speak of my experience and having an explanation instead of "you're antisocial / useless / disorganised / awkward" is actually a relief. 

  • It sounds very hard for you. I do know someone with ASD who had delusional thoughts that were brought on by the chronic stress of undiagnosed ASD. Or you could have something else combined with ASD, which might make it even harder for you. It is up to the professionals to figure it out.

    It is tempting to worry about what other people will think and their judgments. In therapy I have often been told the importance of "staying in your own head", not doing the thinking for others. If other people have ignorant thoughts, it says a lot about them, not about you.

    This is your life. It seems sensible, as you are experiencing issues that do sound related to the spectrum, to get answers. You deserve to be supported. It sounds like you have been struggling long enough. 

    Do you know how to go about requesting an assessment?


  • It's both fear about the results and lack of support.  Feeling very insecure tonight. Those who know me well never say anything. Couple that with the fact I’m reckoned to have had delusional thoughts put it all together and the doubts and uncertainties can rise to the surface.

  • It is so important to have the support of your family and friends. I'm so sorry you don't feel supported. 
    Do you feel your family is well informed? They might have a narrow idea of what autism is based on stereotypes or one person they happen to know.

    I hope you can feel supported here. 

    There are lots of walls we can bump in to. I have come across many people with ASD1 who struggle with the reactions of family and friends. I also feel that even my supportive family thinks "well you don't have it that bad, you have a very light form" and you often get the "we are all a bit autistic", and the "well, if the label makes you happy" kind of stuff from friends.

    Maybe they are two separate issues: getting recognition for your life-long struggles on the one side and on the other side just finally understanding what exactly your difficulties are. Only a proper diagnostic procedure can get to the bottom of that. Even when you have the label - don't expect everyone to give you the recognition you desire.

    And even without a label of ASD, if via testing you are given more insight into your specific challenges which your V/P gap suggests, you might be able to educate yourself and others on your specific challenges and your needs?

    Do you think it is the fear about the results that is stopping you pressing for a diagnosis or also the lack of support? 

  • I think I would feel more confident if family said " Yes we definitely think you are onto something worth pursuing" . These after all are the people who know me best. I post my concerns on Facebook but nobody really takes the bait and says " Go ahead.we'll support you". It makes me think they think I'm talking out of my backside.

  • If there are more than 12 points discrepancy that is a red flag: I have copy pasted an answer from an other site (I am not sure about the scientific validity of this, but it looks right):

    "In a normal population, the expected mean VIQ-PIQ discrepancy is zero (VIQ is short for Verbal IQ and PIQ is Performance IQ). When there is a large discrepancy between verbal and performance IQ, it generally points out to a learning difficulty or overcompensation and/or impairment of some kind. For instance non-verbal learning difficulty (NVLD) is usually suspected when there is a high VIQ-PIQ difference (VIQ>PIQ).

    Usually when a discrepancy of at least 12 points is found between the VIQ & PIQ, the Full Scale IQ score should be interpreted cautiously. Even though the verbal-performance discrepancy is not used to directly diagnose a learning disability, it is like a red flag – it alert parents and teachers to the child's strengths and weaknesses. Therefore, a full analysis of the individual subtests that comprise each score should be looked at and if scatter is very large, it warrants further investigation.

    Research has indicated that a discrepancy towards verbal (VIQ > PIQ) has also been linked with Asperger's syndrome but not with other pervasive developmental disorders. Relatively low VIQ has been considered an indicator of dyslexia and relatively low PIQ of dyspraxia. Studies have also suggested that hyperactivity in children is associated with relatively low performance IQ. In more recent studies, it is found that there is a high degree of individual and familial comorbidity between these three disorders.

    The term clinically significant means that the severity of the behaviour/performance is significantly different from the norm and indicates a strong possibility of a clinical problem." http://www.brainy-child.com/experts/verbal-IQ-performance-IQ.shtml

  • I've only done an official test once as a teenager and never knew the result. However going by admittedly questionable online tests I score 137 and 144+ for verbal  and the following for non-verbal/visual spatial   -71,61,73,85,72,72,77,63, 82,72,84,81,75,67,56,

    Mensa DK gave me 94 taking a stab at it and 80 just pressing randomly
    Mensa DK= 80/94= 0.85 It may or may not give undue weight to random answers. Mensa Romania gave me 80 and under 75 taking a stab/choosing randomly. Mensa Hungary  gave me 73. All are non-verbal.

  • What I was told, is that NVLD (=NLD) is a different kind of diagnosis from a neurological perspective whereas ASD is a more behavioural diagnosis. 

    NLD often occurs together with ASD (but not necessarily). You might find the thread about the verbal - performance gap interesting thread on verbal vs performance IQ gap . NLD is something that is very clear from IQ tests, spatial insight tests etc... This learning disability is quite common in ASD, if I understand it correctly (I am not a professional !!) it is when when the verbal IQ is much higher than the performance IQ.

    These are invisible handicaps which cause great stress in the workplace and in your personal life. For instance: poor visual short term memory, bad spatial insight, etc - because you are verbally strong - people totally overestimate your capabilities and put mistakes and shortcomings down to "laziness and sloppiness and not trying hard enough".  People with this invisible handicap put great efforts into compensating and this then takes its toll in the long run. 

    I think caretwo is right: it is up to the professionals to do all the tests. It is not an either/or story and good professionals will give you the results of the tests with pointers where your deficits are - so you can better understand yourself and explain yourself better to others. You don't need a full diagnosis to be able to say for instance: "I have a disability with regard to the visual processing of information". 


  • My advice, particularly based on your final sentence, is to start the process of obtaining a diagnosis.

    At the moment you are second-guessing the outcome. You question whether you would meet the full criteria but you are not an expert.