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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...

Parents

  • Autism is a developmental condition and regardless of whether you had an idyllic childhood or a traumatic childhood there must have been some speech delay (or disorder), cognitive differences or sensory difficulties present throughout your childhood if you are autistic. 

    Speech delays (and speech disorders or communication difficulties of some form), or learning difficulties are hallmark signs of autism spectrum disorder. Those referred to formerly as 'High functioning' autistic children may be much more socially inclined compared to those with more severe autism, however, the same communication issue applies to all those on the autism spectrum. Autism doesn't appear suddenly at puberty. And as debilitating as anxiety is, it is a symptom of the difficulties that autistic people encounter in the environment, but it's not an autistic trait in itself. 

    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. It can happen that older generations are not identified in childhood, but even so, they/we do still all have difficulties in childhood—which are often put down to other conditions.

    If you don't feel that you were affected in your early life then it's difficult to see how you could be autistic. If your difficulties only began in adulthood then I would guess he is right and you should probably go for a mental health assessment as its more likely to be some other disorder that's emerged and needs to be addressed.

  • 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 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 ☕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

Reply
  • 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

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