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What to do after a diagnosis is NOT confirmed after an assessment?

NAS39237

Hi,

I had my Autism assessment today after 3 years of waiting and the assessor believed my situation did not line up with the Autism Spectrum. His reasoning seemed to be that it is because I felt that it did not affect my life at an early age but certain debilitation have become more problematic in adulthood.  He mentioned the vague term of me having a personality disorder - more likely Anxiety. Yet, despite my obvious disappointment I don't know what to make of it - I've a list of Personality Disorders and common traits within them and nothing seems to jump out at a connection.

The problem is I feel that the debilitation I have are not just apparent when I am anxious. A lot of it is social based but even when I am with a friend I still cannot make eye contact among many other sensory and personality conflicts - I feel as if I simply don't qualify as an adult nor can handle any life skills expected as an adult.

I could go on further but the simple point is I am stuck, do I get another referral which I would have to pay for/cannot afford or look further into this vague term of personality disorder and go from there? I feel the debilitation getting worse, struggling to manage my work by the second. I was hoping to get through this get assistance but now I fee l am left  with nothing... & I don't know what to do...

  • in reply to ☕Tassimo ☕

    I mean that I have self identified with being Autistic. This is similar to being self-diagnosed, but something more than that. It's a term that I discovered earlier this week by watching a Youtube video on the Autistamatic channel. The term resonated with me.

  • in reply to Shadweller
    Shadweller said:
    I already know and have already self identified.

    Shadweller, what do you mean by self-identify?

  • in reply to ☕Tassimo ☕
    ☕Tassimo ☕ said:
    I am reluctant to accept the concept of masking or social camouflaging because of its anecdotal nature and the wild variations in people's descriptions of it.

    I have heard and read very similar statements about higher social functioning autism on account of those who socially camouflage and personally mask in public ~ yet in private the 'theatrical' cloaks and masks of societal pretence are no longer or so much required and their autistic behaviourisms are no longer hidden for fear of social ridicule, or personal assault. 

    ☕Tassimo ☕ said:
    But I'm open to evidence that could convince me.

    Well along with the above mentioned articles and studies already mentioned above, there are also these to consider:

    Masking is a process by which an individual changes or "masks" their natural personality to conform to social pressures, abuse or harassment. Some examples of masking are a single overly dominant temperament, or humour, two in-congruent temperaments, or displaying three of the four main temperaments within the same individual. Masking can be strongly influenced by environmental factors such as authoritarian parents, rejection, and emotional, physical, or sexual abuse. An individual may not even know they are masking because it is a behaviour that can take many forms.

    Masking should not be confused with masking behaviour, which is to mentally block feelings of suffering as a survival mechanism.

    https://en.wikipedia.org/wiki/Masking_(personality)

    Or in other words:

    Camouflaging or masking refers to strategies that individuals with ASD use to mask social difficulties and enable them to “pass” as non-autistic in social situations (Hull et al., 2017; Livingston et al., 2020). Camouflaging consists of complex copying behaviours, compensation, and/or masking of some personality traits or autistic characteristics, with an adaptive purpose that promotes functioning in response to specific environmental or situational demands (Hull et al., 2019; Tubío-Fungueiriño et al., 2020). Examples of camouflaging include mimicking facial expressions of a conversation partner, forcing oneself to make eye contact or stop talking about a specific interest, and using social scripts in everyday interactions.

    https://intercommunityaction.org/camouflaging-masking-in-autism-spectrum-disorder/

    How to spot SEND pupils who are 'social masking': As a teacher, you can identify this key character trait in girls with autism spectrum disorder

    https://www.tes.com/news/how-spot-send-pupils-who-are-social-masking

    Autism Masking: To Blend or Not to Bland

    https://www.healthline.com/health/autism/autism-masking

    Social camouflaging in autism: Is it time to lose the mask?

    https://journals.sagepub.com/doi/full/10.1177/1362361319878559

    Is Autistic Camouflaging Really Bad for Your Health? The true impact of masking in women with autism.

    https://www.psychologytoday.com/gb/blog/women-autism-spectrum-disorder/202010/is-autistic-camouflaging-really-bad-your-health

  • As your situation so closely mirrors mine, I looked over some of the relevant info I have found again last night -please see below for the section I have marked in bold and large font, which clearly stands out as hugely relevant, it is most dismaying that the assessor did not take this into account. Also section C.
    I have discovered that it is quite common for girls to not manifest until high school, or uni. And girls have been known to have problems obtaining a diagnosis for this reason. It doesn't seem to be such a common thing for boys, but I don't see why a boy (such as myself) could not also learn to mask and camoflague if the demands do not exceed their capacity to cope. I may end up in the same situation as you, with failing to get a diagnosis due to ill informed assessors. How incredibly frustrating.
    I have some doubt as to whether I want to go ahead with my own assessment now, seeing how subjective and hit and miss the results can be. I already know and have already self identified. This may be enough for me.,
    This 'currently or by history' statement and it's meaning, is a relatively recent development in the research and understanding. If your assessor completed his training prior to this he may not be abreast of these developments. It was not a known thing the last time I looked into the whole topic myself. It is the reason that I have finally been able to self identify myself. Because now finally all of the facts fit together in my case,but only when taking this into account.

    DSM-5 Autism Diagnostic Criteria

    A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

    1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
    2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication
    3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in  sharing imaginative play or in making friends; to absence of interest in peers.
     
    C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life).
  • in reply to Dawn

    I used to always cry at school when I'd done anything, even minor things, to receive criticism from the teacher. I think they thought I cried to try to get away with things, but even now as an adult any type of perceived criticism makes me really emotional. I just really struggle with it even when I try to rationalise the situation. It doesn't need to be being "told off", just anything I feel I've done wrong and it being picked up on and I'm an emotional mess. It is hard to explain to people who don't experience this themselves though. 

  • in reply to Catlover

    Me too on the no language delay. Can even be very advanced. Mine was. The process of aquisition was different though, lots of copying mouth movements, then talking to the animals on my wall paper rather than people.

    I'm sure you've perhaps come across the tell tail on tantrum /meltdown differential, but in case others haven't. A tantrum is to get something - all two year olds try it on. A meltdown has no motive, there is no gain. Poor little kiddie (adult even when you put me in situation where senses or anxiety is overwhelmed) just can't cope. Pure and simple. Nothing to gain except a whole lot of embarrassment. 

  • Lord, this can't be easy for you.

    What do you think the truth is?

    There are four possibilities:

    A) This guy has it wrong - and yes, as others point out below, just because an autistic trait is there it doesn't have to mean it's causing a problem at every or even any point in life. They can all cause problems some times or all the time, but not necessarily. If you are treated with love and understanding, the traits can just a fact about you, which might even be an advantage at times.

    B) This guy is right about personality disorder but has missed the autism as above which in fact may also be present

    C) This guy is right, you miss the diagnostic threshold for autism albeit you might have some traits but there is a personality disorder

    D) This guy is right you don't have autism, but has also missed the mark altogether with personality disorders and the problem is something else.

    None of us can diagnose but in a state of total confusion about what I was going through, I did also walk myself through the possibility of personality disorders. I called up every diagnostic questionnaire on every disorder from every reputable psychology website, examined all of the profiles to see if any of it sat with anything in my emotional landscape, phoned a friend and tested them against her perceptions of me... It didn't match.

    Hence, my question, what do you think the truth is? 

    If you can walk yourself through these possibilities with brutal self honesty, and also possibly the views of someone you trust, and the personality disorders aren't sitting right with you and autism still is, maybe you need a second opinion. You are entitled to one.

  • in reply to Shadweller

    Well, yes. If there is limited interaction with the world during childhood, or some other form of insulation, then it's highly possible for the difficulties to go unnoticed or to be ignored. They are still there. A tree is still a tree even when no one is around to see it. 

  • in reply to Catlover

    Forgive me. I should have written: speech disorders and not speech delays, or maybe communication difficulties.

  • in reply to Deepthought

    Thanks, Deep, I will give these a scan when I get a minute. I am reluctant to accept the concept of masking or social camouflaging because of its anecdotal nature and the wild variations in people's descriptions of it. But I'm open to evidence that could convince me.

  • in reply to Martin

    I'm sorry. I wrote speech delays instead of speech disorders.

  • in reply to ☕Tassimo ☕
    ☕Tassimo ☕ said:

    There are studies that indicate that some autistic people cope better in adulthood, but I have not seen any research that suggests the opposite to be the case.

    Well here's a few studies and informed opinions on the matter:

    The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5040731/

    Why Autism in Girls Is Often Missed Until Adulthood

    https://www.amitahealth.org/blog-articles/behavioral-health/why-autism-in-girls-is-often-missed-until-adulthood

    The Autism Dilemma for Women Diagnosis

    https://researchautism.org/the-autism-dilemma-for-women-diagnosis/

    Autism in women ~ Eloise looks under the radar.

    https://thepsychologist.bps.org.uk/volume-32/august-2019/autism-women

    “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5509825/

  • in reply to ☕Tassimo ☕

    But these things may not become apparent until the social demands exceed ones capacity to cope. The social demands at primary school can be quite limited and behaviours can be learnt in order to mask and fit in and escape negative attention.

    For many, its not until later on in high school, or even at university that the demands exceed ones ability to cope and mask.

    Prof Tony Attwood seems quite clear on those points in some of his talks that are on on You Tube.

    www.youtube.com/watch

    Also Autism was barely a known thing for many of us who went to school in the 70s and 80s.It's very difficult to remember signs of having something if you didn't know it existed.

  • in reply to ☕Tassimo ☕

    Communication issues are not identical with 'speech delay'; you said that 'speech delay' was necessary for an autism diagnosis, and this is not the case. I had no speech delay, I spoke quite early and became very fluent quickly. While I was unable to speak at school, I continued to speak fluently and volubly outside school. My problems with speaking were enivironment-specific.

  • I hope that this is not the case, as my circumstances appear to be quite similar to yours, in as much as I don't recall a great deal of social difficulty with my peers during primary school itself. But as my life went on my difficulties got worse and worse.

    However, I have read that Autism may not become apparent in childhood, until social demands exceed a person's capacity to cope. Could this be a factor? I think so.

    Also, it would make sense that many of us have such great support networks as children, if we are lucky we are surrounded by loving and supportive parents and other family members, much more so than many of us have as adults. Support can help reduce the severity Autistic characteristics experienced and displayed. It seems to me, that this could be another reason why symptoms may be less obvious in childhood, and more obvious as adults?

    I think this could be the case for me at least. As far as I can recall I was relatively well socially adjusted to my peers in primary school. Although I was very solitary out of school, had a great deal of anxiety surrounding after school social events, and was painfully shy around adults.

    My primary school years were in the 1970s too, Autism was hardly even talked about back then.

  • in reply to Martin

    Can I just ask a general question about speech delays:

    I'm assuming that speech delay in this context means that the person was slow to learn to talk as a child?

    Is it also an autistic trait if someone is slow to formulate what they want to say?
    I have a really clear memory of taking a gymnastics class when I was 8 or 9.  We were all sitting in a group, and the teacher asked me a question.  It took me so long to formulate my reply that she asked me, 'Do you speak English?' and I said 'yes'.  The other children all laughed, and I didn't know why.  Is this an autistic thing?

    These days I tend to formulate what I'm going to say at a more 'normal' speed, but if someone stops me unexpectedly in the street and asks me for directions, it takes me quite a long time to get the words out.

  • in reply to M

    I'm sure there are many men and women who have gone under the radar for a variety of reasons during their childhood—me included. 

    I don't really buy into the 'masking' or 'camouflaging' theory (intentionally learning neurotypical behaviours and mimicking them in social situations). A similar concept exists within LGBT community, where it is referred to as 'straight-acting' (intentionally copying and adopting heterosexual behaviours to gain acceptance in social and professional situations). 

    Anyway, my original point was to simply to bring to the attention of the poster what the DSM-5 states needs to be present for a diagnosis of autism.

    To be diagnosed with autism, one must have social communication difficulties, and restricted, repetitive and/or sensory behaviours or interests...[ ]  and that... [ ] they must have been present from early childhood. 

  • in reply to ☕Tassimo ☕

    Social communication challenges yes, to some degree, but we were talking about speech delays.

    Most women/girls will often try more where socialisation is concerned. Not because we are social beings, but because we feel the need to do what everyone else is doing outwardly.

    I think we are all aware of the requirements of a diagnosis.

  • in reply to Martin
    Martin said:
    This changed at four and a half years of age when I went to infant school, and in response to this more challenging environment I became selectively mute. I was entirely mute for 3 months and following this had shorter episodes of mutism throughout my infant school life.

    Is that not an example of speech disorder at an early age?

    I realise now that I had written speech delays instead of speech disorders. Sorry for the confusion.

    The     DSM-5 says to be diagnosed with autism, people must have social communication difficulties, and restricted, repetitive and/or sensory behaviours or interests and that they must have had these from early childhood.

  • in reply to Catlover

    All children with autism spectrum disorder face social communication challenges, though how these manifest varies. High functioning autistic children may well be much more socially inclined, more communicative and some may even be advanced communicators beyond their age. I was one of these children. Yet even though I had a huge active vocabulary, and could read text way beyond my reading age, I still had dysarthria at various times during childhood and adolescence. I still have intermittent stuttering as an adult. 

    Rightly or wrongly, the DSM sates that for a diagnosis of autism, communication difficulties must have been present from early childhood.