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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. 

Parents

  • I don't really know what to say to this, to be honest... there's some very harsh language here about "ruining" birthdays and having a "strop". I fully appreciate that NT people have their own challenges and, of course, relationships work both ways. Everyone should be considerate of one another's needs. I just worry that you might be viewing meltdowns as an intentional behaviour rather than a reaction to feeling overwhelmed (unless I've misinterpreted this). 

    Perhaps your daughter's desire to bake the cake comes from the fact that she views it as doing something nice for the person whose birthday it is, and the frustration comes from the fact that, in her eyes, she can't get it right. She might feel that she's letting that person down.

    I'm also a little concerned about the reference to 'taking sides'. You're a family - surely that's a unit rather than a set of two sides? Perhaps you could talk to your daughter about some alternative strategies for baking the cake; maybe she could make it the night before so that if a meltdown happens, it doesn't happen on the person's birthday. She'd also have time to fix it if she didn't feel it was quite right, which might relieve some pressure.

    I really hope I'm not coming across as judgemental in any way - I can only speak from my own perspective as an autistic person. My best advice would be to communicate as a family unit - try not to focus on autistic versus neurotypical, but on what you can all do to support each other.

  • in reply to DuckBread

    I don't feel you're being judgemental.  I know that my daughter's desire to bake a cake is to do something nice for that person and she feels she has let them down when it isn't good enough in her eyes.  I understand that but I find it difficult to accept that having undergone the same scenario for every family members birthday for the last 8 years, and having discussed as a family alternative strategies, that the rest of the family have to right off their birthday every year as a disaster.  Yes, despite her good intentions she does make it difficult for everyone and it is only human nature that they will feel resentful.  They have every right to feel resentful just as she would if we ignored her birthday every year.   There are only so many adjustments you can make.  We have bent over backwards to accommodate this issue with our daughter.  We have discussed alternative strategies.  Sadly we have decided to cancel everyone's birthday and abandon them altogether.  That in my opinion is not fair.  My elder son also has ASC and has his own set of issues but I do not think it is reasonable or helpful to my daughter that we should be submitting to her meltdowns on this issue.  Forget ASC or any other label for one minute, all human beings  have needs and deserve them equally.  Just because someone has a diagnosable something doesn't make it ok to upset everyone else without any questions or discussions raised.   

Reply
  • in reply to DuckBread

    I don't feel you're being judgemental.  I know that my daughter's desire to bake a cake is to do something nice for that person and she feels she has let them down when it isn't good enough in her eyes.  I understand that but I find it difficult to accept that having undergone the same scenario for every family members birthday for the last 8 years, and having discussed as a family alternative strategies, that the rest of the family have to right off their birthday every year as a disaster.  Yes, despite her good intentions she does make it difficult for everyone and it is only human nature that they will feel resentful.  They have every right to feel resentful just as she would if we ignored her birthday every year.   There are only so many adjustments you can make.  We have bent over backwards to accommodate this issue with our daughter.  We have discussed alternative strategies.  Sadly we have decided to cancel everyone's birthday and abandon them altogether.  That in my opinion is not fair.  My elder son also has ASC and has his own set of issues but I do not think it is reasonable or helpful to my daughter that we should be submitting to her meltdowns on this issue.  Forget ASC or any other label for one minute, all human beings  have needs and deserve them equally.  Just because someone has a diagnosable something doesn't make it ok to upset everyone else without any questions or discussions raised.   

Children
  • in reply to Eleanor

    Out of interest, why have you decided to abandon birthdays? This may cause more resentment amongst the rest of the family if they feel that birthdays have been cancelled due to the cake issue. Were there other challenges alongside the cake?

    I don't think it's a case of submitting to meltdowns, as that suggests she's doing them intentionally to get a response. Meltdowns are completely overwhelming and not intentional at all (many of us actually feel deeply embarrassed about them, even though we know they can't be helped). It can also be really difficult to move away from routines (such as baking the cake), which could be enough to cause a meltdown in itself.

    I agree that all human beings have needs, but it can sometimes be hard to communicate those needs (from both perspectives) if your brains are wired in different ways.

    It might be worth calling the NAS Helpline to see if they can offer you some advice on strategies to support each other. Their number is on the website.