Does anyone regret diagnosis?

Biblioklept
Biblioklept Online Community Member Posts: 113 Empowering
in Autism and neurodiversity

Being diagnosed with ASD and ADHD changed my life for the better, it gave me so much understanding of why I am the way I am, and enabled me to find some actually useful ways to address and change parts of my life for the better…

BUT all the news from the US such as the proposed 'autism registry' and has started making me worry if it was a mistake. I'll never regret getting diagnosed but I do worry about what it may mean for the future.

Anyone else feeling this way at the moment?

Comments

  • rubin16
    rubin16 Online Community Member, Scope Member Posts: 862 Championing

    I feel the same at the moment, before being diagnosed I never really heard about autism. It was only when I got my diagnosis that I learnt why I was so different and why I did certain things. It made me understand and be aware more of my own self and others going through similar things.

    After being diagnosed though I feel in some way like I'm stuck in the system, like I'm always going to need on going care and not have a voice. I have always been treated like I can't make decisions myself and feel excluded from most things because I have autism.

    With the US things, it makes me worry about how the world is "trying to cure/treat autism" it feels like we are going back to hitlers regime, and our government is just as bad with understanding. It makes me think at times having this diagnosis on record could maybe end badly for me one day. Feels like were back in victorian era where having autism meant serving life in asylums.

  • Albus_Scope
    Albus_Scope Posts: 9,650 Scope Online Community Coordinator

    I can understand feeling that way for sure @Biblioklept and @rubin16 the diagnosis allows us access to more help (in theory anyway) and helps us to understad ourselves more, thus we can be more compassionate and understanding with ourselves.

    The only thing I regret is not being able to vote in the American elections. 😆

    And heck, if I do end up being on some autism watch list, at least I'll know I'll be on there with some really awesome people. 😊

  • anisty
    anisty Online Community Member Posts: 816 Trailblazing

    My daughter refuses to accept her diagnosis. She's 17 and was only diagnosed September 2023.

    The decision to seek diagnosis didn't come from her which maybe is a big factor in her refusing to accept it!

    I hope she will find it useful in future.

    My eldest daughter (32) has no diagnosis and cannot afford private diagnosis (no nhs right to choose in Scotland; private would be the only way)

    She is sure she is autistic and I have no doubt she is either. She suffers a lot of odd physical health symptoms which doctors put down to long covid, though i have my doubts.

    The research into gut microbiomes and autism is fascinating and i think her difficulties are far more likely to be leaky gut rather than long covid.

    My eldest son turned down assessment as a teen and kicked off against all support (i'm pretty sure he could fit a PDA profile)

    In his case, so far, it seems to be paying off for him as he has achieved what he set out to achieve - full time work, house, partner, child, car etc etc. He wanted all that from being quite young (about 4yrs as i recall he was wondering how people get a first car when they have no car to get to a garage!)

    He left home at 18 and i honestly don't know how he's managed it all, tbh as we didn't set him up with any money and he looked very un-employable with very long hair, dyed jet black, very poor eye contact and not really any good qualifications at all. He seems to have worked his way through in a series of night working jobs.

    And then he met a very good woman who has shaped him into quite the family man!

    He'd really not want any diagnosis. He has moderately severe dyspraxia and needed support in school but deliberately picked jobs needing co ordination skills - the determination in him is really very admirable and has made him resilient i think.

  • OverlyAnxious
    OverlyAnxious Online Community Member Posts: 4,204 Championing

    I don't think the problem here is the diagnosis. The problem is the damage that the Trump administration is causing to both the USA and the rest of the world. I'm genuinely shocked by the number of people that are still supporting and justifying them.

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