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Autism is a real disability to some,,,,,,, are you such a person ?

aidie

sayings like , "autism is a superpower" or "autism isn't a disability, it is a different ability" worry me sometimes

I feel like this invalidates people who aren't quite comfortable with being Autistic or Autistic people who feel as though their ASD has more negative than positive impacts or those who feel as though their diagnosis has an equal amount of positive and negative effects. 

I understand these sayings have positive intentions and are meant to empower Autistic people, but it just kinda comes off as inspirational stuff to me. Again this is good. 

But two thirds of autistic people are in the mid and severe ends of the spectrum and so will probably never/rarely be in this forum or have their voice/opinions heard.

I am lucky to be the way I am.  But there are days I wish I could swallow a pill and my autism would be gone.

I am equal amounts of positive and negative with shrinking negatives.

But I always think about those who are really suffering on the spectrum.

Do you feel Autism is a real downer for you  ?  how bad is it ? and most importantly ,,,,,,,,,What can be done to help or change things for you?

Parents

  • I'm autistic and comfortable with the term superpowers - it's a convenient way to describe a number of the benefits associated with my particular autistic characteristics. It includes an exceptional long term memory as well as attention to detail and creativity. I wouldn't wish autism away - it's so integrated I wouldn't know myself without it. But I'm lucky that I've been able to find employment customised around my strengths and steers around most weaknesses.

    What isn't very clear to colleagues is the extent of some of those weaknesses because I do a good job of compensating/masking/hiding them - but it's exhausting, and I still know about them! One of the most powerful ways I've understood autism is that the profile is likely to be spikey. For education exams, I could get 100% on advanced papers but somehow fail the standard papers...

    What I would prefer to change is a world better designed/more accepting, inclusive and considerate - to reduce stress and anxiety (people explaining what they mean / their actual motivation / not playing office politics / not being made to feel weird for being introvert or not wanting loads of social interaction etc. 

    Most of the time I wouldn't identify as disabled; but then there are times when it does feel like one - because you end up in various forms of incapacity (exhausted from dealing with people -> loads of sleep  / stressful interaction -> anxiety preventing sleep / brain fog etc. ) And while it's in some ways a first world problem - things like strong smells (coffee, perfume, tobacco) make me nauseous and make it difficult to think - with commuting on public transport a particular problem. 

    I think self diagnosis is valid - especially when it's pretty obvious. That's the route I've chosen to follow as an adult - I don't need an official diagnosis. I have a well paid job with a supportive employer - and so can access support/reasonable adjustments without a NHS (or private) diagnosis. I appreciate how lucky this means I am. I wouldn't dream of burdening the NHS to get an official diagnosis given there are so many others that will benefit far more than me - and for whom that route is a necessity including for accessing mental health resources or passing PIP assessments. It is frustrating when people assert self-diagnosis cheapens etc. things for others. Particularly for those who have made choices like me - I don't need a formal diagnosis - I'd rather those suffering without access to support took up the limited diagnostic resources instead. 

  • in reply to Losan
    Losan said:
    I'd rather those suffering without access to support took up the limited diagnostic resources instead. 

    That is one of the main reasons i haven't ,i manage without a diagnosis , but there are so many variables in whether to get one or not  ,If it is effecting you badly and getting one helps you should .

    I would add that over the last 40 years i have seen Professionals get it wrong so many times ,which does cause even more problems .

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  • in reply to Losan
    Losan said:
    I'd rather those suffering without access to support took up the limited diagnostic resources instead. 

    That is one of the main reasons i haven't ,i manage without a diagnosis , but there are so many variables in whether to get one or not  ,If it is effecting you badly and getting one helps you should .

    I would add that over the last 40 years i have seen Professionals get it wrong so many times ,which does cause even more problems .

Children
  • in reply to mael

    Exactly :) To be fair, I could afford to pay for a private diagnosis so if I wanted a bit of paper I would go that route (and I know my employer has paid for colleagues to go the private diagnosis route). In hindsight, I was diagnosable from around the age of three - but in the 70s it wasn't really looked for or understood in girls apart from a few exceptions.

    If based on self-diagnosis you're pretty confident...then it might actually be a better use of money to invest in seeing a counsellor/mentor/therapist who focuses on autism. That doesn't unlock government/financial support - but it can help so much from a practical/processing/surviving perspective.