Published on 12, July, 2020
Hello.
My 10yo daughter has been diagnosed with high functioning ASD. We did always think there was a few ever so slight oddities about her but it was never noticeable to others. And still isn't. She's very bright, no learning difficulties, academic and sporty. But her behaviour at home is appalling. At school she's ok, struggling a bit socially. She's possessive of her friends at school. To the extent that a friendship often runs it's course and the friend just can't deal with it anymore and rejects her. Two friends have remained but it's a daily struggle for them.
At home she will not share. Anything. Ever. She will not let her younger sister play with her friend without including her. But she'd never let her sister join her and her friend. She's extremely jealous and envious. Everything has to be measured so it's equal, even tap water. She manipulates her sister to agree to dodgy toy swaps. She bribes her sister to not have the same interests as her ie I will give you this barbie if you promise to not like ballet any more. The sister is exhausted.
She has hissyfits about clothes and food the whole time. The meltdowns I can deal with better, it's pain and sorrow and that makes you want to help so desperately. It's just the meanness that's unbearable. It gets worse with tiredness as the school year goes on. When rested she's pretty ok. When alone with one parent she's an angel, the nicest loveliest girl imaginable. And she says, she just really can't deal with having siblings.
We went to the local pool yesterday and a boy and his mum came into the changing room. He was clearly on the other side of this spectrum, non verbal, screaming about the bright light. Another lady, stranger to them asked the mum"are you ok". I started crying silently to my self. For the boy and his saintly patient mum. But also for my situation. Had I told that mum that I understand because my daughter has asd she'd have said "are you having a laugh". No one will ever ask me if I'm ok because our asd looks like spoilt brattiness to an outsider.
No one knows what we deal with at home. My husband and I feel like it's our dirty little secret. We are exhausted. She has me in tears so many times a day. No one will ever understand the level of abuse she hurls, the anxiety she has, the depression, and eventually her deep wish to die. Does anyone have the same situation? Is there anyone out there who understands? Or are we just alone. And what do I do??? What is the help that we need? We're waiting for a referral to a paediatrician to start a behaviour assessment. But for now?
Soft food definitely rings a bell! Texture is such a massive problem, I had to have all curries/pasta sauces/soups with bits blended until my late teens (I did gradually train myself out of it when I got to the age where I had to go to restaurants and eat more, e.g. with work colleagues, though some textures/texture combos still get me ten years later; raw tomatoes, yuck! Crunchy/bitty/slimy all at once). Glad what I've written has been helpful for you! x
Hi there. Nothing much I can add except to stress you aren't alone. My son is 6 and has been diagnosed. My husband says he wishes he was 'normal' whatever that is! Other families can go to McDonald's or wherever and eat out. We can't. He'll only eat certain 'soft' foods. We go to the coast a lot but if we have an ice cream I feel so guilty as my son won't have one. I find myself saying to complete strangers coming towards us that he just won't eat one. To justify myself. They must think awwww how mean they're eating one and not him. It's so hard and outsiders even family members don't get it. My husband and I haven't been out together much because he'll only stay with grandparents. It puts a strain on the family unit but you have to be on the same page which we've struggled with in the past.
The part where you said you couldn't say you understood to the other mum as your child from an onlooker would think she's spoilt. I totally get that. Don't know about you but I'm finding this forum sooo helpful. Emma's understanding is a total eye opener and insight to how our children feel. Obviously one of the issues they can have is communicating and telling you what's going on.
Sorry if I've ranted on about myself and our situation. Stay strong.
My son was also diagnosed with high functioning ASD but he is more on the hyperactive level. We turned to occupational therapy for his behavioral issues - he used to harm himself by banging his head on the wall or slapping himself. After a year, he improved drastically. OT session really helped. Maybe it might make a difference for your daughter, too. Good luck
Hi NAS37767,
Seems like you've had excellent responses.
I don't know if you are interested but the NAS also has this course 'Women and Girls on the Autism Spectrum' which is openly available at the moment - https://www.autism.org.uk/professionals/training-consultancy/online/women-and-girls.aspx
This might be a suitable link to pass on to family members and teachers too - it's a certificated course.
Hope this helps,
Nicky-Mod
You're very welcome :) I'll check in tomorrow to answer! x
Hi.
Im still totally in awe of your reply, I guess I didn’t expect it. Thank you SO much. It just makes total sense. I’ll pm you some questions tomorrow because this is just the best insight into our situation I could wish for at this stage. Thank you so much again.
You're not alone. I'm autistic (aspergers) and was very similar as a child with regard to not sharing and struggling with having a sibling, I think in retrospect it stemmed from deep anxiety and a need to impose some order on a world I found incredibly chaotic and hard to deal with. Siblings are kind of the death of predictability and having control of your own environment, they bring chaos to an area of your life that was previously safe and predictable (and autistic people, kids especially, NEED routine and predictability to feel secure). I completely understand why your daughter finds it hard. I found it hard.
Another thing I struggled with was that my sibling was not autistic and seemed to click with my mum, personality-wise, a lot more naturally than I did. I was finding relationships with other people hard at playgroup/school due to the autism (having to learn social behaviour rather than it come naturally) and very used to being excluded/rejected when people finally found out I was faking it or simply got tired of me being different. I think I must have really feared the same thing happening at home now there was someone better at the social stuff around.In hindsight, very illogical! My parents always cared about us and looked after us equally, but the fear of disparity was very real regardless. After all, everyone at school was very cliquey and fickle, why shouldn't that apply at home? I was still learning the rules of the social world and without the inherent ability to read people's intentions accurately, I didn't realise that some things don't apply in some situations/relationships. The fact that I was used to my parents' attention being solely focused on me and now it was sometimes on my brother only reinforced this perception that my sibling's existence meant I would get less and less from my parents and possibly even be discarded in favour of the 'better model'- I was aware that everyone saw me as naughty, as different in a way that was 'wrong'. I was honestly scared my parents would prefer to funnel their effort into the one that was inherently good at everything I wasn't and that seemed so important to everybody- and I wasn't diagnosed until I was a teenager, so I didn't even know why it all came naturally to him and not to me.Result; I was very much guarding "my" resources at all times, very scared of getting the worse end of the deal, seeing people with the same interests as me as "competition" (in a discussion about favourite colours at pre-school, I once told a girl "No, my favourite colour is red, you need to think of your own") and convinced that all people were inherently untrustworthy and would try to "screw me over" if I didn't look out for myself with some force. Sounds similar to your daughter. And at school, that view was being reinforced constantly for me, because children are fickle in their friendships and eager to bully whoever appears weakest, take what they want from them, even pretend to be their friend in order to get close enough to hurt them (I got that a lot, especially from the other girls). The answer; guard your resources, protect yourself first and foremost and don't trust people. The good news is that I did grow out of it eventually. It took a long time, but I got there. I think it was mostly just maturity and gradually gaining the ability to self-reflect, though I had some counselling in my early teens that did help too.More good news; things have moved on since I was that age, and now CBT (cognitive behavioural therapy) is readily available and might be able to help your daughter change her way of thinking to become less jealous and aggressive-defensive; that's what CBT is all about, learning to self-reflect and think differently. I know it's really hard to deal with, but if she's anything like me it's just a survival mechanism on her part. It's not helpful or healthy in the long run, but in her head that's what she fundamentally needs to do to keep existing. You can't break that pattern, she needs to, and she needs to realise that she needs to. It sounds like you just have a very anxious and scared child who is trying to keep herself going by whatever means she can think of, and doesn't realise that the measures she has implemented are, in the long term, only making her situation worse. She's terrified of being isolated and left adrift in a chaotic universe but her attempts to grab hold of and control things and people (which she thinks will stabilise her) are just pushing them further and further out of reach. I completely understand what you're all going through and I'm so sad this is happening to you all. It's dreadful for everyone concerned. I really recognise that "deep wish to die" feeling, I've felt that, it just sounds like she is struggling so much. :( I hope things get better for her (and for all of you) ASAP.Don't hesitate to ask (PM if it's easier for you) anything you need to. xx