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Do our kids need an exact diagnosis?

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  • #25547
    dw
    Moderator

    Hi, I wanted to ask other parents how important it’s been for them to have an exact diagnosis of their child’s behavioral challenges. One of my children had years of mental health episodes, and it seemed like every psychiatrist, physician and school professional offered up a new diagnosis. At 18, a full diagnostic evaluation concluded that she had three possible diagnoses. Two of them had never been mentioned by any of the professionals who’d tried to help her! No diagnosis has seemed to stick. Thankfully, therapy and medication have brought great stability. What has your child experienced?

    #25553
    JenCan
    Participant

    My child recently went to the doctor. The visit summary stated that he has “Active Autistic Disorder” and that they recommended a follow up visit in 6 months for an Autism Check up”. This made me LOL and it also made me really sad. I let the doc know that my son has been Autistic every day of his life and that if it were to become inactive he would be dead because it is his neurotype. When he was younger, and struggling to survive behavioral modification interventions (that his mom didn’t understand were just making things worse) he was labeled with Oppositional Defiance Disorder, Disruptive Behavioral Disorder, and a mood disorder. All these labels did was describe his externalized behavior and lead to more judgement. I would love to see a move away from slapping labels on struggling children, and towards looking underneath the tip of the iceburg at each child’s individual sensory, emotional, cognitive, and learning style, so that we can start supporting them in meaningful ways.

    #25555
    Modmom78
    Participant

    My thoughts on diagnosis are mixed. The diagnosis mattered in getting the ehlp my children needed, like a comprehensive IEP or for teachers and supports to actually provide care they needed. On the otherhand, the stigma associated with diagnosis is real. That goes for internal and external beliefs. My daughter was given a diagnosis of chronic depression when she first went to her first psychologist in 3rd grade. That diagnosis stuck with her regardless of changes in puberty, age, etc. She can’t advocate for it to go away. It does not define her and as a young adult, I have seen her manage her health needs so well. My son has been given some lower level diagnosis and some very acute ones, like ” personality disorder”, ‘bi-polar”, and ADHD. All stated as potential. His behavior has always been extreme and he has been in residential for so long off and on. yet, to this day he only has a diagnosis of ADHD. I don’t think he even cares at this point of the diagnosis, he just wants care and services that don’t traumatize him or add to the symptoms. He has shared that he just wants to be teated like a normal human and not de-humanized. It’s interesting what a label implies.

    #26623
    StefW
    Participant

    Oooouuu! I love everyone’s perspectives and insights on this. I love that idea that it shouldn’t be to slap labels on kiddos to indicate their “undesirable behaviors” and that they should create an awareness in how to promote better accommodations for the neurodivergent rather than expecting everyone to fit into the NT molds of society.
    Their “undesirable” behaviors are not the root of their diagnosis and that isn’t a problem, the problems is their needs aren’t being met and they’re communicating to the best of their capacities in environments not set up for them to thrive, let alone exist comfortably.
    The more I try to figure out how to get/promote and aid my child in getting the change he deserves the more I learn that sometimes they do not want to give those “labels” as easily. I see my child is needing help with anxiety due to his traumas of public school the older he got and realizing he is in fact different than his peers, to be told “Autism is a spectrum, and anxiety is a symptom of autism..” and I feel my eyes roll so hard lol It’s a round about way of saying, we want to chalk it up to AUTISM and not help him cope or accommodate a valid need so that he is supported and validated in the space because then we have to put in work to KNOW the person rather than monitor his diagnosis. I tried to give “PDA” (Pathological Demand Avoidance) and it’s “that can’t be a thing, I never heard of it. you can’t measure that”
    I now just see Autism as a blanket term, that just dismisses that there are other needs and accommodations that are required for a individual to feel safe, comfortable, ect. so that they may function without stressors. The most trauma my child has faced was by the allowance of me, letting these “specialists” try to mold him to the neurotypical molds to look, feel and sound like a “normal” person so that society is comfortable. If I could go back and change things, it would be to remove the stigmas that a disability means to make a individual be performing in a way that makes the outside world comfortable rather than setting up a space so that the individual can thrive/be in a state of peace. A child’s early intervention should not be to mold him to the environment but to teach the parents the needs and requirements of the kiddos make up so they can be better understanding on how to facilitate, accommodate, advocate the child for promotion of the kiddos voices and that they’re self advocates of needs out the gate.
    I have face much aggressive behavior out of the last three years and it’s to my understanding now, that it comes down to a kiddo who is sick and tired of being sick and tired of being forced to look, think, be like a neurotypical child and negate sensory overloads, issues and pains by trying to appear “normal” in spaces that are like FT job hours. I now call my son’s meltdowns, easily triggered stuff and dysregulation a “chronic onset stress” in his life of needs being unmet, unheard, unvalidated. I now just comfort and let him feel his feels and let him be as angry and upset with me (as safely as possible) because I see now, that I may have blinded and been subjecting my kiddo to ableism, myself.

    I am sorry I went off on a rant there, end rant lol. I am reaching a point, I would rather see funding going to the promotion of accommodating spaces, trainings for the law enforcement agencies, healthcare facilities (ER, Urgent Care, ect) teachers, rather than excluding.. the promotion of yes, this kiddo/person is different BUT we are seeing, hearing and still validating the living experience that is theirs. I reached a point in my life, where I am no longer trying to make my kiddo, make others comfortable by silencing and removing/diminishing himself, his feelings, everything about him for others. It has been the result of checking myself and asking myself if the things I am trying to require of my kiddo is actually something I would ask of him if Westernized Medicine and Diagnoses’ never existed or am I trying to make him appear less of who he is for the benefit of others? most often, I then choose, do you kiddo, do you. be you. If you are not safe to be you here, you are not safe and accommodated here. period. By living by that mentality, my kiddo is slowly coming back to being that happy, smiley kiddo I remember. In that smile, I see I am doing right.

    Thanks for your time, holding space as you read this*

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