Adjustments for people with ASD

You’re welcome. All your frustrations are completely understandable and justified; as you say, your daughter’s ASD should in no way invalidate how you feel, nor does it.

I‘m so sorry to hear about her eating disorder. I can’t imagine the constant worry you and your husband must have with that. It makes perfect sense that you wouldn’t want to alter her diet or exercise habits under those circumstances, but I hope in time you can all find alternative ways to cope.

I once read that children take all your time and energy, but children with an ASC take more time and energy than you are physically able to give. Really, very best wishes to you, and remember that parents in need of a rant are always welcome here.

Certainly we all need a good rant from time to time. Parenting children with special needs is incredibly hard. I find it's good to be reminded that our kids aren't doing things to upset or annoy us. Often in the moment we know this but can't access that bit of our brains and just feel the hurt and sadness.

My advice would be to pick a date (keep it to yourself and someone you want to spend the day with) and do something you love without any pressure. 

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!

To clarify, are you saying that your daughter makes a cake the day before the birthday and has a meltdown that continues throughout the whole of the next day?

Or is the meltdown upsetting so it makes you sad during the birthday?

My child finds birthdays hard too. Especially other people's. Inevitably, there will be a lot of very difficult behaviour on the day including multiple meltdowns. Yes it's sad for the person whose birthday it is but I wouldn't think to cancel their birthday. We accept that she struggles, give extra emotional support, reduce demands, and if the day itself is a wash out, we would plan to do something nice whilst our child is in school. It's just an arbitrary day really. You can do nice things and buy gifts for loved ones any day.

At the end of the day I love my daughter and I'm so sad that she finds special days so hard and gets so distressed. 

Have you discussed it during times when your daughter is calm? Could you make a plan? She could come up with ways to calm herself when the cake isn't perfect. Make it 2 days before? Change to a tray bake? 

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

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.

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.

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.   

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.