Autistic DD won’t keep hair up for school - tips?

[Veebs21]

Hi you lovely lot,

My autistic DD will not keep her hair in a ponytail… it’s been going on for the majority of the year after previously having no issues, and nursery were fine with it but her new school has raised it as an issue in terms of helping to control nits (I dread the day…).

It’s also not great as it gets knottier and messier when down, which makes it harder to brush…

She has long hair and I don’t want to cut it short for several reasons, but wondered if anyone had any strategies that worked for this? I’ve tried different hairstyles and made it more difficult to remove (buns, plaits, clips etc) but she just ends up pulling at it and pulling chunks of hair out 😥

I do get it - having your hair in a ponytail all day can be irritating! But any tips to help her manage longer periods with it up I’d love to hear… and do your school enforce hair up? She starts mainstream reception next week with EHCP.

Have you asked her what she doesn't like about having it tied back? Is it the feeling of weight on the back of her head? Does the ponytail irritate the back of her neck?

Have you asked her what she thinks about having shorter hair? I'd love to know what reasons for keeping her hair long trump her comfort and her not wanting to pull it out.

@VitoCorleoneOfMNMafia I’d love to know why you think I wouldn’t do all these basic things? Or why I would be keeping it long for any reasons than thinking purely of her? But here you go anyway.

Of course I would ask her those questions if she would understand and answer me. She is verbal but she doesn’t understand complex questions like that. I know she asks me to put it higher on her head but won’t tolerate a bun so I’m left guessing as to what her reasoning is. I’m guessing it’s just the comfort.

Cutting her hair is an huge change for her and doing that to her when I’m not sure she fully understands could cause serious upset that I can’t undo. She also has quite thick hair that seems to grown forward and it would be harder to control when she wouldn’t be able to tie it back at all.

DD requesting her hair further up but not a bun makes me wonder whether it is the weight of the pony tail/bun that she struggles with. A ponytail lower down may feel like it is heavier/weighing her down. Same for a bun as it is further away from the head. With that in mind, have you tried a style like multiple French braids so the weight is spread more evenly and more of the weight in on top of the head rather than at the back? Alternatively have you tried different hair bands? Sensory wise different types can feel very different.

A friend of mine had success with a half ponytail which was better than nothing, at least kept the hair off her face.

I'm replying to your last message without using the "top-down" convention to put the hopefully-useful things first.

Of course I would ask her those questions if she would understand and answer me.

Would she understand questions along the lines of: Does the ponytail hurt your head? Is it heavy? Would you like to try two "bunches" instead?

Cutting her hair is an huge change for her

Is it the change to her hair itself that she wouldn't like or is there a salon trip that she doesn't like? [ETA: it might not be clear that my point is that if she rejects the salon but not the shorter style, it might be worth you cutting her hair at home.] My mum cut my hair at that age because I did not cope well with the one salon trip she tried. For reasons I'll go into further down, I spent most of my primary years with my hair between jaw and collarbone with one of those soft cotton all-the-way-around Alice bands (not the plastic horseshoe type) to keep it out of my face. It was too short to tangle much and didn't need a hairdryer to dry. I don't know whether the bob cut with Alice band approach might help DD?

I’d love to know why you think I wouldn’t do all these basic things? Or why I would be keeping it long for any reasons than thinking purely of her?

Two reasons.

First reason: Because I read one part of your post, got very distressed by it, and didn't see a later bit. This is my mistake and I'm sorry for that.

Why that happened: Some parents mistake a heavily-masking compliant child for a well child and unscrupulous ABA "practitioners" encourage that belief. The part of your post where you talked about making the hairstyle harder to remove came across to me as compliance-enforcing measures. I got worried and sad that you seemed to be doing that, so much so that I didn't fully parse the later bit where you empathised with DD and asked for "tips to help her manage". Again, my mistake. There was no reason for me to reply immediately whilst still distressed and I should have waited and re-read your OP.

Second reason: Because my job requires me to do a lot of fault-finding and not to assume that "the obvious" has been done because frequently it hasn't and that thinking has spread into my everyday interactions. That, I make no apology for.

Thank you for the additional information. I'm also autistic although wasn't diagnosed until adulthood. I didn't want to assume that your DD's experience would be like mine. I was also updo-resistant because who wants a thin elastic tie pulling some hairs more than others and pulling your whole scalp backwards and making the back of your head hurt? I was, and remain, generally styling-resistant across the board, because who wants a noisy hot hairdryer burning your ears whilst your mum pulls your hair with a brush? And who wants a stinky bright noisy salon full of strange people? Until I was old enough to comb and tie up my own hair, DM bobbed it for me. Once I could tie it myself, I could make it comfortable and had no more problems. My experiences informed the questions I asked.

In @VitoCorleoneOfMNMafia's defence, quite a lot of parents seem to want their DDs to have long hair because it looks pretty on insta even if the poor kids hate it. Clearly not your case - but the first post did have me wondering too!

I have hair quite similar to your DDs and weight is a issue. Half ponytail can work as can piling it up so it sits on top of the head rather than dragging itself down.

And long hair for girls whether they are comfortable or not could be another "you will comply" ABA-type imposition.

Or it could, as you have since indicated, be a desire not to subject your daughter to a sudden change that cannot be reversed.

Yes that’s a good point - the thing is I don’t know that she’d sit still for (my likely very slow 😂) French braids, she doesn’t love having her hair brushed, and fussing with it for too long is likely to frustrate her. It’s why I try to get it over and done with as quick as possible with a quick pony. But it’s something I can try while she’s watching her tablet or something - thank you.

Unfortunately she does the same with half up and half down @openupmyeagereyes. I have bought several different bobbles to try, including a scrunchie, which I thought she might prefer but that was an immediate no. I’ve got thinner and thicker to try so we’ll see where we get to. Hopefully it’ll be a Goldilocks moment of getting it juuuuust right!

@VitoCorleoneOfMNMafia Let me state for the record that I am very much against ABA-style anything. My daughter is free to be herself entirely and is regularly the picture of non-compliance, I can assure you! So please don’t worry. But going to school, there are unfortunately some things that she is going to have to fall into line with to some extent, including uniform. As I said, her nursery were ok with it, so she had it down. But her school have stated it to be an issue because of it increasing the likelihood of spreading of nits (apparently) so I was hoping for tips to help her manage and keep it in for longer - I’ve often had people highlight sensory things I hadn’t thought of on these boards before (as per @OvertakenByLego’s reply), and also experiences with mainstream schools who may have made adjustments - or can TAs put hair back up? I don’t know, DD is my eldest - so that’s sort of what I was hoping for.

With regards to different ways of questioning, no those sort of things won’t work either, unfortunately. She doesn’t understand how to reply to “why” so can’t tell me why she has pulled it out independently. She wouldn’t understand the concept of heavy, but just asks for me to “put it bigger” if it’s too low (she means higher). If I ask her if she wants it in bunches she says no. Everything is a no. Including “would you like your hair short like Mummy’s”. However, I just asked her if she liked her hair long, and she said yes.

I appreciate your apology, I think we should always try to approach responses with kindness on here rather than pre-judging. I try to assume everyone here has their child’s best interests at heart and I can assure you that that is absolutely the case with me and my DD. Thanks for explaining your reaction, though.

@VitoCorleoneOfMNMafia I’ve also just read your edit that must have appeared while I was typing my reply. Appreciate the additional context and of course always keen to hear from autistic adults how I can help DD more.

One more thought. Schools can, if they want to, be very flexible on uniform.

Reasonable adjustments can be made to the uniform policy. Having said that, having DD’s hair up if possible is probably better to try to avoid having to deal with nits, which from your posts DD would struggle with. Sometimes TAs and teachers will help reception DC with hair/uniform etc.

Does DD have an EHCP?

Would DD be able to look at different hairstyles with you online and communicate if she is willing to try one of them? Alternatively, would she try a bandana which would be better than nothing?

I really appreciate you taking the time to understand where I am coming from.

I will see if I can find for you where I bought my combs from, because one of the reasons why I hated my Mum brushing my hair was that the brush hurt.

And of course they are out of stock. https://www.amazon.co.uk/Tooth-Detangles-Detangling-Cellulose-Tortoise/dp/B0BGBV6XMD You might find a similar one. The important sensory features:

• The teeth and the gaps between are wide: 5mm teeth with 3mm gaps, meaning that the hair passes easily through the teeth.
• The tooth tips are rounded so they don't scratch the scalp.
• There's no moulding sprue (the rough line running around all the teeth of a lot of combs) to catch on the hair whilst you comb it. Bonus: this causes less damage to the hair.
• The whole comb is big so it's easy to grip. This will become relevant as DD ages and can take on combing for herself.

I use "telephone cable" hair ties when I ponytail mine because they stay put better without needing being wrapped tightly. I wonder if DD is pulling her hair down because the style is starting to sag during the day and becoming uncomfortable for her?

Re-reading what you said earlier: I don't assume that a parent pursuing ABA doesn't care about their child's wellbeing. I assume that they are mistaken about how to achieve the best outcome for their child.

We ended up getting our daughter's hair cut into a bob, not least because the thought of trying to deal with nits was terrifying. It did take a couple of years of getting her to come round to the idea though. In the meantime would the school accept a hairband/ soft hairband rather than fully up? Also, we found it much easier to put it up/ keep it up if we used leave in conditioner. Other than that, it was a very difficult couple of years, so sympathies.

No advice, but I have similar with DS (12). He won’t wear it up, or have it cut. It has not been cut since before lockdown and is increasingly difficult to manage, though he is getting slightly better at brushing it.

DS has never had nits. I don’t know if we have just been lucky, or whether it is because he doesn’t get close enough to other kids to catch nits 😆

Same story here and we ended up chopping it short. Not only would she not tie it back, but she chewed it too. Luckily she now loves it short. She will tolerate a soft fabric headband to keep it back.

I guess my only suggestion would be one simple loose plait.

Sounds like she needed a chewable stim toy.

I'm in my forties and I will tear the skin around my fingers until it bleeds if I don't have a fidget toy or something like it. Self-destructive behaviour communicates an unmet need.

She has many, but sometimes hair just tasted better 😂

Same, DD has chewies galore but often chooses to chew other things instead, her tablet cover is a favourite but the skin on her fingers is a new one and I’m at a loss of how to redirect that when she actively chooses that over safe alternatives, even when gently prompted (she is demand avoidant - not pathologically so, but definitely have to tread carefully with too many demands/requests). I think the problem is once she bites the skin once she then bites it again as she wants to “even it out” so there are no lifted edges but obviously that just exacerbates the problem.

I’ve never tried a fabric headband on her - will give it a go @Ticktockk@TedLasto The standard ones are a straight no 😂

@VitoCorleoneOfMNMafia Will also order some of the telephone cable style ties. I’ve had one of those before and they are much more comfortable - will look at the comb too, we use a Tangle Teezer at the moment which is ok but she does just have hair that’s quite coarse and knots easily. Leave in conditioner helps a bit.

@OvertakenByLego She does have an EHCP but this started happening just as it was finalised so no mention of anything - her sensory needs are definjtely in flux and there’s probably things in there that bother her less now while other things have kicked up a gear, definjtely her oral sensory needs are higher now than when it was written but thankfully we’ll get a review after 6 months as she’s under 5 so we can see what’s changed. I did see her teachers and TA yesterday and said they’re happy to put it back up so perhaps problem solved, but will still try out some of these tips to see if she finds them any better.

If the EHCP doesn’t include sensory OT provision, it is worth trying to pursue that at the next review.

Yes it does, but not much. She has one 90 minute session per full term (three a year), with the idea that her TA will implement strategies daily. OT is apparently coming to observe her on Monday, which is her first day - so at least they are getting in there early.

Look to increase this. DD sounds like she has sensory needs that aren’t a minor issue and she requires ongoing direct input more frequently.

I think the problem is once she bites the skin once she then bites it again as she wants to “even it out” so there are no lifted edges but obviously that just exacerbates the problem.

That is exactly why she bites repeatedly. She probably bites or picks in the first place to remove a perceived or real hangnail. Adult-Vito carries nail clippers so that I can trim a hangnail neatly before trying to tear it off, or in the worst case, having torn or bitten once, interrupt the cycle by carefully trimming the rest of the hangnail flat without ripping sheets of skin off and ending up bleeding.

A newly-acquired safe alternative is a Russian wedding ring in sterling (much cheaper than the usual three colours of gold) that I can roll up and down my finger. A spinner ring with interesting knobbly bits on, or a bracelet with interesting beads, might also help. The benefit of using jewellery as the alternative stimming mechanism is that I'm wearing it so it's already where I need it to be when I get the bite/pick urge and I don't have to fish in my bag for it.

I know that schools often bar jewellery but I would argue that it's a reasonable adjustment for a child who is literally biting herself until she bleeds.

Skin picking and biting is really hard to deal with, even as an adult, because it's two issues disguised as one: compulsive fixing of a perceived defect (the initial hangnail) and stimming.