Adjustments for people with ASD

I’m sorry your family is going through this, truly, as birthdays are the one special day we get each year, but I agree completely with everything Trogluddite has said.

Throughout my childhood, teens and early twenties I was a zero-tolerance perfectionist who would also have a meltdown whenever anything I did wasn’t to my exacting standards. My ASD didn’t get diagnosed until I was 30, so you can imagine the kind of hell our family life and relationships endured. As my meltdowns became increasingly unacceptable, from about age 16 onwards I gradually started to substitute these for self-harming, which I learned I could hide from others, and everyone generally seemed happier, which then reinforced this in my mind as a suitable coping strategy.

If the cake your daughter makes isn’t turning out exactly as she’s pictured in her head, she will be feeling frustrated beyond words at her own incompetence and ineptitude, and she probably won’t be able to separate this from being a reflection on her cleverness and level of care taken. In my personal experience, what I have in intelligence I lack in dexterity and it’s taken me a very, very long time to accept that my body is incapable of performing at anything like the same level as my brain (unlike everyone around me who seems to be generally in more or less the same place for both on the bell curve) (or people are thick but good at sport so don’t care).

Your daughter is still very young (and emotionally much, much younger than her calendar age) and hormones will be working against her on top of her autism and lack of self-awareness. As hard as it is for the family to “put up with her behaviour”, please be kind to her; she’s not doing it deliberately and her autism will make it very difficult for her to express the level of anger and frustration she is feeling at herself in a less destructive way. It’s hard for NTs to understand because you’re able to take a breath and step back from the situation and put your emotions in check and put the situation in context. People with ASD don’t have the wiring in our brains to do that, hence our circuits overload.

Maybe something helpful you can do is establish with your daughter what she needs from you when she has a meltdown. When I was her age, I usually needed to withdraw and would often storm off to my bedroom where I could cry and rock and hate myself in peace. Even when my mother would come and check on me and try to soothe me with kind words or stroking my arm or head (which she thought would be nice), I would just lash out and want to be left alone until I’d had time to fully decompress, and then sleep, because it is exhausting. I’d always feel really embarrassed when I had to face my family again and just wished they would carry on and not mention it. I wouldn’t be surprised if she feels the same, but there may be other things that she needs during and after a meltdown.

Her self-awareness will improve as she gets older, especially if she can read about ASD and NTs and develop healthy ways to cope. I find I’m less volatile if I don’t eat any kind of sugar or carbs, and do some exercise (like going for a run) when I start feeling the frustration building inside me. Unfortunately, I’m so poorly now with ME and chronic migraine—both in no small part from years of chronic masking—that I’m not able to exercise (or exorcise!) out my frustrations anymore, which just makes the ME and migraines worse. Please remember that as angry and frustrated as you are with the situation, your daughter is feeling the same a million-fold at herself, and unlike you she has no natural way to cope with it.

I really hope you can find a way forward together as a family. Sending strength and love. Xx

I’m sorry your family is going through this, truly, as birthdays are the one special day we get each year, but I agree completely with everything Trogluddite has said.

Throughout my childhood, teens and early twenties I was a zero-tolerance perfectionist who would also have a meltdown whenever anything I did wasn’t to my exacting standards. My ASD didn’t get diagnosed until I was 30, so you can imagine the kind of hell our family life and relationships endured. As my meltdowns became increasingly unacceptable, from about age 16 onwards I gradually started to substitute these for self-harming, which I learned I could hide from others, and everyone generally seemed happier, which then reinforced this in my mind as a suitable coping strategy.

If the cake your daughter makes isn’t turning out exactly as she’s pictured in her head, she will be feeling frustrated beyond words at her own incompetence and ineptitude, and she probably won’t be able to separate this from being a reflection on her cleverness and level of care taken. In my personal experience, what I have in intelligence I lack in dexterity and it’s taken me a very, very long time to accept that my body is incapable of performing at anything like the same level as my brain (unlike everyone around me who seems to be generally in more or less the same place for both on the bell curve) (or people are thick but good at sport so don’t care).

Your daughter is still very young (and emotionally much, much younger than her calendar age) and hormones will be working against her on top of her autism and lack of self-awareness. As hard as it is for the family to “put up with her behaviour”, please be kind to her; she’s not doing it deliberately and her autism will make it very difficult for her to express the level of anger and frustration she is feeling at herself in a less destructive way. It’s hard for NTs to understand because you’re able to take a breath and step back from the situation and put your emotions in check and put the situation in context. People with ASD don’t have the wiring in our brains to do that, hence our circuits overload.

Maybe something helpful you can do is establish with your daughter what she needs from you when she has a meltdown. When I was her age, I usually needed to withdraw and would often storm off to my bedroom where I could cry and rock and hate myself in peace. Even when my mother would come and check on me and try to soothe me with kind words or stroking my arm or head (which she thought would be nice), I would just lash out and want to be left alone until I’d had time to fully decompress, and then sleep, because it is exhausting. I’d always feel really embarrassed when I had to face my family again and just wished they would carry on and not mention it. I wouldn’t be surprised if she feels the same, but there may be other things that she needs during and after a meltdown.

Her self-awareness will improve as she gets older, especially if she can read about ASD and NTs and develop healthy ways to cope. I find I’m less volatile if I don’t eat any kind of sugar or carbs, and do some exercise (like going for a run) when I start feeling the frustration building inside me. Unfortunately, I’m so poorly now with ME and chronic migraine—both in no small part from years of chronic masking—that I’m not able to exercise (or exorcise!) out my frustrations anymore, which just makes the ME and migraines worse. Please remember that as angry and frustrated as you are with the situation, your daughter is feeling the same a million-fold at herself, and unlike you she has no natural way to cope with it.

I really hope you can find a way forward together as a family. Sending strength and love. Xx

Thank you Nessie82 for your reply. Everything you said about your own melt downs resonates with my daughter.   I should point out that I am always nice to my daughter because I love her very much.  My post on here is out of years of frustration, and to avoid taking the frustration out on my daughter or family I posted on here instead.  She generally storms off to her room and wants to be left alone to calm down in her own way.   However,  we have an added complication in that she is in recovery for a severe eating disorder and is on a strict eating regime that we must get her to stick to.    As her eating disorder hospitalised her and she was sectioned she cannot afford to lose much weight otherwise she gets readmitted to hospital. 

Everytime my daughter misses a meal,  even for genuine reasons such as her meltdown last night,  it sends me and her dad in to a panic.

We have tried persuading her to drop the cake making ritual,  or making it the day before but none of these have worked because if it fails the day before she is insistent on having another go and if that doesn't work then we are back in a meltdown situation. 

She loves everyone's birthday and she loves giving presents and making cakes for them.   My post was very bleak and in the bright light of day things don't seem so bad.  She has made many successful cakes but as she has gone vegan it is a whole new ball game baking so we are back to basics.

I can't stop my daughters meltdowns because she is who she is.  I can try and make strategies to mitigate them but likewise I cannot stop myself being frustrated by them because I too have my own personality.   I don't claim to be perfect, I accept my shortcomings but as with my daughter and her meltdowns I cannot change my personality to suit others . That would effectively be masking!