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Adjustments for people with ASD

Eleanor

Now, I know this is controversial but I am having trouble making some adjustments for people with ASC.  I should point out here that I have two offspring aged 18 and 21 diagnosed with ASC and to the best of my knowledge me and their father don't have ASC (although that is debatable).  I appreciate that noise and sensory issues cause distress,  which in many cases (my daughter included) are mitigated by noise cancelling headphones but I have this repeated issue every single year related to birthday cakes.   Yes, I know this may sound weird, bizarre even,  but every single year since my daughter has been old enough to bake we have the annual birthday cake trauma.  She is fantastic at baking but unless it is absolutely perfect she goes in to a melt down (which is almost every year) and ruins the birthday of the person she is making the cake for.

We have tried to avoid this by suggesting buying a cake,  which causes another strop.  So,  I am asking why should we make an adjustment for someone knowing that they are going to ruin 80% of our birthdays.  Why should  we accept that the one day of our year that is devoted to us should be dominated and ruined by the same individual each year.  Every one has their needs ASC or NT and I find this difficult  to accept. 

This brings me to a much wider and more controversial problem.  I am constantly reminded I should make adjustments for people with ASC, and believe me I don't underestimate their struggles having had a daughter who has spent 29 months in a CAMHS inpatient unit with an eating disorder), but there appears to be no recognition from the people with ASC that an NT person is permitted to have any problems and that theirs are somewhat less important than someone with ASC.   Why should I as someone who is nominally NT, constantly be accommodating to the demands of people with ASC when they agree oblivious to my needs. 

If the world was run by people with ASC then the NT's would be demanding you make accommodations for us.  Surely,  that tells us something.  We should be trying to meet some common ground not simply telling the other side that they must make adjustments for us.  If we met this common ground then the compromise/adjustments on both sides would make both our lives easier but it seems that as in many things this is unlikely to happen as we each believe we have the greater rights.   Adjustment works both ways. 

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  • Eleanor said:
    If the world was run by people with ASC then the NT's would be demanding you make accommodations for us.

    [NB: "We" = ASD, "You" = NT: Sweeping generalisations for ease of writing only!]

    We are making accommodations for you; constantly.

    Every single moment of the day that we're around you, we're trying to understand your social rules, make sense of your reactions, mimic your behaviour, work out which of our emotions match the words you use for yours (and often when we're not around you, too!). When we succeed, the "normality" of our behaviour makes it easy to take for granted. When we fail, it is sure to be noticed. The majority of these skills are instinctive to you; you can't comprehend what it's like not to possess them, because for you, they are normally effortless.

    When our behaviour better meets with your approval, it is not because we are less autistic, it is only because we are straining harder to conceal it and have learned a few new tricks to make the act more convincing. I'm nearly fifty, and I can promise you, it never becomes instinctive - sometimes habitual, maybe, but often not even that. One of the commonest reasons that autistic people suffer from anxiety and depression is the sheer amount of bending over backwards that we have to do, always with our fingers crossed that we're bending in the right direction at the right time.

    I do believe in compromise, and I see no reason why autistic people should simply get their own way all of the time. But accommodations for us are most often only small steps towards you meeting us half way. We have to second guess our instincts and bend our natural behaviour to meet your unspoken expectations just to have a simple conversation. We grow up believing that it's the key to success, so we just swallow the frustration and anxiety most of the time. We're doing it constantly; silently; most of the time without even being asked to - that is, until our brain can't take it any more and we have a melt-down!

    I don't mean to belittle your frustration or the problems that you face, and I do acknowledge that our sometimes bewildering behaviour can cause a lot of anxiety and heartbreak for the people around us, albeit usually unintentionally. I have fallen into the trap of setting NT vs. ASD in my own writing above, so I realise how easy it is to do, especially when we're venting our frustrations; but I don't really believe that turning it into a tug-of-war will get any of us very far. I wouldn't want a world run exclusively by autistic people; but the fact is that we're a small minority, and we do expend far more effort trying to understand your point of view than you do ours - we have no choice; when in Rome, do as the Romans do.

    Best wishes.

Reply
  • Eleanor said:
    If the world was run by people with ASC then the NT's would be demanding you make accommodations for us.

    [NB: "We" = ASD, "You" = NT: Sweeping generalisations for ease of writing only!]

    We are making accommodations for you; constantly.

    Every single moment of the day that we're around you, we're trying to understand your social rules, make sense of your reactions, mimic your behaviour, work out which of our emotions match the words you use for yours (and often when we're not around you, too!). When we succeed, the "normality" of our behaviour makes it easy to take for granted. When we fail, it is sure to be noticed. The majority of these skills are instinctive to you; you can't comprehend what it's like not to possess them, because for you, they are normally effortless.

    When our behaviour better meets with your approval, it is not because we are less autistic, it is only because we are straining harder to conceal it and have learned a few new tricks to make the act more convincing. I'm nearly fifty, and I can promise you, it never becomes instinctive - sometimes habitual, maybe, but often not even that. One of the commonest reasons that autistic people suffer from anxiety and depression is the sheer amount of bending over backwards that we have to do, always with our fingers crossed that we're bending in the right direction at the right time.

    I do believe in compromise, and I see no reason why autistic people should simply get their own way all of the time. But accommodations for us are most often only small steps towards you meeting us half way. We have to second guess our instincts and bend our natural behaviour to meet your unspoken expectations just to have a simple conversation. We grow up believing that it's the key to success, so we just swallow the frustration and anxiety most of the time. We're doing it constantly; silently; most of the time without even being asked to - that is, until our brain can't take it any more and we have a melt-down!

    I don't mean to belittle your frustration or the problems that you face, and I do acknowledge that our sometimes bewildering behaviour can cause a lot of anxiety and heartbreak for the people around us, albeit usually unintentionally. I have fallen into the trap of setting NT vs. ASD in my own writing above, so I realise how easy it is to do, especially when we're venting our frustrations; but I don't really believe that turning it into a tug-of-war will get any of us very far. I wouldn't want a world run exclusively by autistic people; but the fact is that we're a small minority, and we do expend far more effort trying to understand your point of view than you do ours - we have no choice; when in Rome, do as the Romans do.

    Best wishes.

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