BBC In Depth: the ongoing battle to define autism

https://www.bbc.co.uk/news/articles/cdew81wd2y8o

Warning: unsettling especially for those late diagnosed.

Parents
  • These words of UF's are reassuring I think for those already diagnosed:

    "It would be a terrible thing to take away a diagnosis retrospectively. It's the future I'm concerned with, making diagnostic process more precise - targeting very different individual needs rather than a label."

    So Uta Frith wants those who are late diagnosed to lose their diagnosis.

    I believe not (see above).

  • But then she said in that Telegraph interview that it was absurd to call Chris Packham autistic because he could communicate so well! In my view, publicly questioning someone’s diagnosis is also ‘a terrible thing’.

  • That really is disgusting. Uta nonsense!

  • In my case, it took someone I know and trust to gently and bravely suggest I might want to consider that I might be autistic and to think about getting formally assessed. (I'd never even used the word when we'd ever spoken). She even took the time to reach out via email out of the blue to do so, having been thinking about it and she could see I needed answers. Somehow that suggestion allowed my long-standing inkling (while feeling I must be wrong) to find a tipping point into finally allowing myself to tentatively articulate my suspicion -initially to a GP, then claim (after proper diagnosis) my full identity, and make sense of my life for the first time. Bookends of external validation (her suggestion, then my seeking and getting answers) so to speak - I wonder if I'd have struggled on, suffering more and more, had that first kindness now been done (how can I ever thank her enough for that?), I dread to think. 

    It saddens me to think of someone maybe needing that same encouragement, then hearing Uta's take on the situation and struggling on in silence, denied the missing puzzle piece they so desperately need because they felt shamed to have even raised the question inside their own mind never mind speak it aloud and seek the beginnings of help, support, understanding. 

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  • In my case, it took someone I know and trust to gently and bravely suggest I might want to consider that I might be autistic and to think about getting formally assessed. (I'd never even used the word when we'd ever spoken). She even took the time to reach out via email out of the blue to do so, having been thinking about it and she could see I needed answers. Somehow that suggestion allowed my long-standing inkling (while feeling I must be wrong) to find a tipping point into finally allowing myself to tentatively articulate my suspicion -initially to a GP, then claim (after proper diagnosis) my full identity, and make sense of my life for the first time. Bookends of external validation (her suggestion, then my seeking and getting answers) so to speak - I wonder if I'd have struggled on, suffering more and more, had that first kindness now been done (how can I ever thank her enough for that?), I dread to think. 

    It saddens me to think of someone maybe needing that same encouragement, then hearing Uta's take on the situation and struggling on in silence, denied the missing puzzle piece they so desperately need because they felt shamed to have even raised the question inside their own mind never mind speak it aloud and seek the beginnings of help, support, understanding. 

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