DD not coping with periods (poss ASD?)

[ChocolateRaisin09]

DD is 12 and has had 5 periods now. They're not particularly heavy and not painful but she goes very pale and feels very sick, doesn't eat much. She was appalled when she first started last summer (we and school had prepared her) and is very angry that boys don't have it, that it will be every month etc. She hates the sight of blood so it has been a battle to get her to check her pad, she's asked for dark fabric pads so she can't see it as much (we use reuseables and period pants and it turns out she hates disposables anyway) and she says she hates the feeling of the blood so much that it makes her feel sick. She won't entertain the thought of tampons but maybe one day?
I have A LOT of sympathy, I've had bad endometriosis since I was her age, I would throw up for days and needed to take lots of pain killers for the pain. So I am really worried about her having that, but this seems different? It seems more psychological, she is so anxious that she shakes and feels sick. I tried talking to school about it as she has days off sometimes (her dad is not happy about this!) and it's a battle getting her into school that week. She just goes round and round in circles saying I hate it I hate it, what if this, what if that... and I have to really be stern to stop her and get her to listen to my advice, ie, This is happening and you can cope with it, and it's never as bad as you think.
Once the week is over she is fine and forgets all about it, but this one week (every two months so far) is just crazy for the whole family- she doesn't want to move (because then she feels the blood) doesn't want to go out, refuses to eat etc. I'm trying to be patient as I do suspect she has some ASD tendencies. But I'm not sure how knowing that would help us going forward.
Just hoping someone has some experience really! She is a very bright kid and well behaved, sometimes I'm really surprised that she doesn't get this, but then she refuses to read about it (usually reads everything) or even think about it, she just wants to deny its happening. She says she associates blood with bad things (she's very squeamish obviously) and she just freaks out every times she sees it.

Thank you if you have read this long rant, I'm kind of exhausted and my husband isn't hugely sympathetic. Agh.

Hi op. I have a daughter who is autistic. If you think she is please start a referral process snd look back start making notes about everything that suggests this since early years. While autism a spectrum conditon she either is or isnt so the best possible way for her to be understood and understand herself is to know if she is autistic

I can only speak knowing how much things like this distress my child...i would let her have time off when she needs it i imagine she will get used to i as she gets older

Your husband has no idea how it feels so his opinion has to reflect thsr. Would he go to work with his pants filled with blood ?

Abso-bloody-lutely, thank you I will say that to him!

Thank you so much. I'm sorry if I sound flippant. I guess I am wary as her best friend is autistic and his mum always says things got harder once he had an EHCP etc, and in every other respect she is doing well at school, socially etc. But you're right, understanding who she is and feeling validated quite apart from school etc is so important. And actually it would help us all (dad!) to feel ok about her missing school. I do think it will get better with age, just a slower process perhaps.
Thank you, x

I know what you mean - not flippant - just that is v unusual for your friend to say that - I spend a lot of time with autistic girls and their parents - and generally the more help and understanding the better

Your friend may be 'correlating ' that life has got harder with the diagnosis etc when actually life does get harder for autistic kids as they get older

Also - I have seen a close relative not get diagnosed til adulthood and I think an early diagnosis would have saved years of mental health problmes not knowing why they found things so hard

anyway - not quite the answer to your question ! I sympthise too - I hated periods still do! And schools aren't very sympathetic places are they? with all the stupid toilet rules etc

I was like this. It was hellish for a year or so and I hated it. Felt very squeamish, hated the feeling of it, didn't like thinking or talking about it.
I had a few friends (probably 5 of us in total) who were the same.
I'm really sorry to say it, but actually for me the best thing was my mum being really firm with me and basically telling me to get over myself. If she's not in pain she shouldn't be having days off. You've got to have a Frank conversation with her.

Having an autistic best friend can in itself be an indicating factor (not on its own, of course) - we tend to seek each other out!
Have a good Google about how ASD presents in girls - the psychologist Sarah Hendrickx is a good place to start, or Tony Attwood.
P.S. An ECHP is a different thing from the diagnosis itself.

Also, sorry @ChocolateRaisin09 on re-reading my post, I think it came across as a bit brusque. I didn't mean to! 🫣

My DD is autistic and what helped her was making her a social story. This is a booklet which you write for her to read - so for example DDs started with
"My name is x and I am x years old" with a cartoon of a girl who looked like her. Next page said "sometimes I have my period" with a the cartoon girl and a pic of a blood droplet. Third page "sometimes my periods make me feel worried and anxious. It's okay to feel like this." And the cartoon girl looking sad. 4th page - "sometimes I forget to change my pad because I don't like blood. Pads feel uncomfortable and I worry about people being able to see them"
Etc
It's about normalising her feelings. The last few pages were things like "I need to remember to change my pad or I will get sore and uncomfortable" and "even though I don't like periods they won't go away, so I need to work hard to get used to them"
And "if I'm feeling really worried talking to an adult can make me feel better. I will use my emotion cards to let an adult know if I am feeling worried".

For the cartoon images I use clipart or similar images I find free online. I have just one or two lines and a nice big image, print out and staple into a booklet. DD's is laminated so she can look at it as much as she likes (and it lives in the bathroom once a month!).

We also have some visuals up in the bathroom with the stages of changing a pad. DD knows how to do it on her own but the visuals can be a sort of safety net for getting her through something she doesn't enjoy in a series of short manageable steps.

We also found an A4 poster online for menstrual self care _ it has lots of small images of things that can make us feel better like chocolate, watching a movie with friends etc I found that and the visuals on a site called twinkl which I can really recommend.

I'd also have a look online for autism related advice about puberty and periods.

How heavy are her periods? If they aren't hugely heavy I'd look into some really good period pants. Lots of them are a bit thin but there are some that are supposedly thick absorbent enough that they will replace a pad - in which case she would just need to pop her underwear in the wash at the end of each day and not have to contend with seeing blood or using pads. Worth a bit of online review reading perhaps.

Sympathies and good luck!

My dd has a Dx of ASD and was exactly the same. She literally sat on her bed motionless during a period. Very angry about it.

over the course of about 1yr or more she did get used to it, but it took time.

she’ll hopefully be fine everything takes longer with ASD.