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.

Parents
  • 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

  • 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

  • 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.

  • I suspect that you had the misfortune to be assessed by someone whose understanding of autism is significantly out of date. 'Made eye contact' is such a red flag in this regard. I sometimes find eye contact relatively comfortable, sometimes extremely uncomfortable, and its often somewhere in the middle, with discomfort and internal 'measuring'/regulating of it with masking etc. all relative to how much I have in the tank that day, 'spoons'-wise. Your being able to look them in the eye in broadly typical ratios of to/away etc. should not have been given the unduly significant weight that I suspect it has been. I'm sorry that you've been left in this place of feeling (I suspect correctly) that they got it wrong. A private diagnosis from someone a bit more up to date may be well worth the cost, if you can manage to save up for it, and assuming that - like me - you don't feel comfortable saying (despite probably knowing deep down that you are - 'I'm autistic' without knowing you have that piece of paper that officially says so. Others here are self-diagnosed, which is an equally valid position to take so don't be afraid to be one of them. And your child's autism is hardly insignificant in all this. They could be the officially autistic result of a cocktail of you and your partner's traits all shaken together to make up a critical mass of neurodivergence that reads more overtly clearly. Or it could be that your masking is such a well-trained reflexive muscle that  you needed a better assessor. I suspect the latter is more at the heart of it. I hope you're not feeling too despondent, and wish you well. You deserve to be here, and I hope this community brings more clarity and sense of being seen than your assessment experience did. 

Reply
  • I suspect that you had the misfortune to be assessed by someone whose understanding of autism is significantly out of date. 'Made eye contact' is such a red flag in this regard. I sometimes find eye contact relatively comfortable, sometimes extremely uncomfortable, and its often somewhere in the middle, with discomfort and internal 'measuring'/regulating of it with masking etc. all relative to how much I have in the tank that day, 'spoons'-wise. Your being able to look them in the eye in broadly typical ratios of to/away etc. should not have been given the unduly significant weight that I suspect it has been. I'm sorry that you've been left in this place of feeling (I suspect correctly) that they got it wrong. A private diagnosis from someone a bit more up to date may be well worth the cost, if you can manage to save up for it, and assuming that - like me - you don't feel comfortable saying (despite probably knowing deep down that you are - 'I'm autistic' without knowing you have that piece of paper that officially says so. Others here are self-diagnosed, which is an equally valid position to take so don't be afraid to be one of them. And your child's autism is hardly insignificant in all this. They could be the officially autistic result of a cocktail of you and your partner's traits all shaken together to make up a critical mass of neurodivergence that reads more overtly clearly. Or it could be that your masking is such a well-trained reflexive muscle that  you needed a better assessor. I suspect the latter is more at the heart of it. I hope you're not feeling too despondent, and wish you well. You deserve to be here, and I hope this community brings more clarity and sense of being seen than your assessment experience did. 

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