Not autistic diagnosis

Hello,

This morning I have my diagnosis from NHS. they told me that while I have autistic traits and they understand why I would pursuit an assessment, I didn't  make the criteria for a diagnosis, they mention specially my empathy and my facial expressions, that are normal.

I don't  know how to feel. I have a child with autism and our similarities was what made me search for an evaluation.

At the moment, I have some accommodations at my job that are in place under the premise that I am undergoing the process of autism diagnosis. Those adaptations have made my life much easier  and I don't  want to cry every day when I am going to my job (like before).

I am guessing  that once my job knows that I don't  have autism I am losing  that help and I don't  know what to do.

I don't  want to be the kind of person that take advantage  of the system and have benefits  that doesn't  need, but I do struggle and now I don't know what to do next.

I hope this post doesn't  offend people with autism, I know this forum  is for the autistic community and I am not sure if I should  post.

  • From what I understand, if there are things that make your job difficult employers need to consider adjustments. I have also read about difficulties that last for more than 12 months. Hopefully if your employer has seen the adjustments have made a difference they will want to continue with things that make an employee comfortable in their job. 

  • Firstly, welcome and you'll always be welcome if you feel you fit in.

    It seems to me that there is no standard for assessment. I have high empathy - possibly *too* high empathy! I can do nice smiles, frowns etc almost as 'normal'. It's masking for me and I'm very good at it. But I am knackered afterwards.

    Possibly if you choose not to take this any further, and as you say you don't require benefits etc, then maybe you can just work out all the accommodations and change of lifestyle that helps you anyway. I'm sorry about the job situation and potential loss of accommodations. I hope that others have good advice for this aspect.

  • Thank you for your reply, I will try to keep my adjustment at my job but I am not going through  the assessment  again, it was hard enough the first time. Sweat smile

  • If I were you i'd try and get a second opinion and speak to your job about having the adjustments with or without the Autism diagnosis.

  • Thank you, again. I have strong interests, sensory issues, rigid routines, repetitive movement (but discreet, like spinning  my foot). I do struggle  to make friends and maintain contact with people and I could die before I notice someone is flirting with me. But I am able to have conversations and I don't  struggle  with eye contact, my facial expressions  are normal and I have the same partner for the last 15 years (he is also going through  the assessment). So, I guess is the point A, what makes me not autistic.

  • It’s not just about the traits, it’s about whether or not they affect your ability to manage your life / are disabling.

    To qualify for an autism diagnosis you have to demonstrate all the criteria in DSM-V:

    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.

    Specify current severity: Severity is based on social communication impairments and restricted repetitive patterns of behavior.

    B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

    1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
    2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).
    3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).
    4. Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

    Specify current severity: Severity is based on social communication impairments and restricted, repetitive patterns of behavior. 

    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).

    D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

    E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level

  • Thanks for your answer. I am waiting for the report and see from there, I guess. But I don't  think that I would ask for a second assessment,  the first one has been hard enough  to go through  it again...

  • Hi and welcome to the community!

    I'm sorry to hear that you didn't get the outcome that you expected.

    The NAS explains your related options here - including potentially raising your concerns directly with the assessors and/or requesting a second opinion via your GP - along with providing links to further advice:

    NAS - What happens during an autism assessment > Assessment results and report

  • EDITING : Also, how much traits do I need to be considered  autistic? Where is the line? How I can have traits but not being autistic? Thanks

  • Thank you for your answer. My employer  gave me the day off to go for the results so I imagine that they will expect that I tell them something  tomorrow and I don't  think is fair for people that are really autistic that I pretend  to be it. I would not do that.

  • I am disappointed that your empathy was highlighted. I think it would be fair to say there is a widespread agreement within the autistic community that we are in fact *extremely* empathetic and that the deficit, if there is one, is in how we *express* that empathy.

    Do you need to tell your employer the result of your assessment?

    I was given a shortened version of my assessment report to provide to employers, but my employer has never asked to see it - they have taken it on faith.