Desperate for help - sensory clothing nightmare for autistic DD

[AllGonePeteTong1]

DD (10) has always had sensory issues but it's become so unmanageable in the last few months. I don't know whether it's the added pressures of year 5 (which she finds hard) or the onset of puberty, but it's a daily struggle to get her dressed. Weekends are no better than school days. It's taking 2 hours of hysterical crying to get her dressed at the moment. It's like she's having a panic attack because she finds everything so uncomfortable. Pants seem to be the biggest trigger. We keep missing the start of school as a result. On Sunday she had to miss her friend's birthday party as she just couldn't get dressed and was so distressed.

We're at our wits end. We've got rid of all her clothes and started again with ultra soft pants (in every style), seamless socks and clothes that she has approved as comfortable. But still, every morning is the same.

I've tried putting on relaxing music and giving her a deep pressure massage before dressing, but that isn't working.

If anyone has got any tips at all, I'd be very grateful. We're due to go on holiday next week and I have visions of us having to cancel as we can't get her to the airport on time....

Would DD wear trousers without pants? Has she tried boys underwear? You said you tried seamless socks but have you tried seamless pants?

Has DD had a sensory OT assessment? What are her wider anxiety levels like?

This sounds exactly like our dd when she was 6. Sadly it resulted in a half term of school avoidance.

Is she in mainstream and does she have an ehcp? We found that although initially the problems were mostly on school mornings, it ended up escalating to every day. We found that although a lot is sensory, it was dd's need for control due to heightened anxiety that was just as bad/ worse. So although we'd have some success for a limited time trying different styles and materials of clothing, it didn't last long because we weren't addressing the actual underlying cause - anxiety. In the end, she didn't dress at all and spent several weeks in PJs or onesie and we weren't able to leave the house.

Does your dd see an OT? What support does she have in place?

What worked for us in the end:

• paying for a private specialist to come into the home to help with the sensory issues and determine the cause of the anxiety (school)

• I took several weeks off work (sick) to be with her and work on sensory needs, emotional literacy, reducing as many daily demands as possible until she recovered enough to begin tolerated different clothes

• Once her mental health recovered, we were able to instigate a reward system for her trying/ keeping on certain clothing. The reward has to be immediate though.

• Putting her socks on while she was asleep (dd's biggest issue is socks and shoes). We still do this and it works reliably.

• Once she had recovered enough to begin going back to school, agreement with the school that she could wear what's he felt most comfortable in, no uniform for a while.

• Reducing time pressure. When she was having a meltdown, retreating with love, allowing her to calm, then returning with patience and a much less pressured attitude. It's more important to get to school, than to get to school on time. There are still days when we have to take our foot off the gas. On those days I call school to say we're on our way but struggling a bit. Takes the pressure off me, which helps me to help her, and enables the school to plan support for when she arrives (which is invariably unnecessary these days).

• Long term: getting an ehcp in place (even without diagnosis). The EP was able to determine what it was about the learning environment that was causing her difficulties. The school have been exceptionally proactive in supporting her. This has reduced her anxiety on a daily basis.

It sounds to me like the demands on your dd are currently outstripping her ability to meet/ cope with those demands. This is an escalating situation, so your focus may be better spent on the cause (anxiety) rather than the symptom (the behaviour and sensory problems).

I'm so sorry for not replying to your responses - I posted the same post in a different place and didn't see the replies here! @Whatafustercluck Can I ask what was causing your DD's anxiety? I've asked my DD about all areas of her life and she can't really articulate would is causing her stress. She does struggle with concentration and academics at school (ADHD) but said her biggest issue is 'being uncomfortable'. How your DD is now? And how did you go about the EHCP process? School have said she won't get one but I'm prepared to fight! However, I'm unclear if I need an Educational Psychologist assessment first?

My DD is getting worse rather than better. We've become experts at staying calm but it's not helping. I've reached out to private OTs and am waiting to hear back.

You can request an EHCNA yourself. On their website, IPSEA has a model letter you can use. You don’t need an EP assessment before making the request. Sadly, some schools incorrectly tell parents their DC won’t get or doesn’t need an EHCP. Don’t let them put you off.

What support is the school providing?

DD might not even know exactly what is causing her stress or why she feels uncomfortable.

Make sure the OT you use has training/qualifications/experience of sensory integration. Not all OTs do.

Some people find the book the Out of Sync Child helpful.

@AllGonePeteTong1 we were never really 100% sure at that stage what caused dd's anxiety, she was too young to articulate it. But it was (mostly) school-based and we have since discovered the following about her:

• Friendship dynamics are hard for her. She makes friends easily, but doesn't keep them. She desperately wants friends, and is very sociable. But the cut and thrust of the playground and the ins and outs of friendships are difficult for her to process and manage. She prefers one intense friendship than multiple friends and this can cause friction with others.
• Her verbal processing speed is slower, which affects verbal comprehension, which so much of schooling relies on. This caused performance anxiety for her (she views mistakes as 'not being good enough' so we've had to help her reframe her understanding in this respect). She doesn't do well with being put on the spot - so teaching styles make a big difference to her.
• The teacher she had at the time was more punitive than supportive/ nurturing. On one occasion she shamed dd by making her sit on a chair while she and a TA discussed (loudly) whether or not to send her to the headteacher. She has very strong reactions to feeling embarrassed, ashamed and other negative feelings.
• She gets panic attacks when she feels sick, she has a fear of vomiting. When she had stomach aches due to anxiety about school, she convinced herself that she was going to be sick in full view of everyone.
• The lunch hall is loud, with too many conversations taking place at once.
• Non uniform days are hard, she struggles to choose something that allows her to 'fit in', and look 'perfect'.
• Anything that isn't usual school day routine causes her stress, when she doesn't know what to expect. So sports days, Xmas games, productions etc, things children are encouraged to find 'fun' aren't always viewed like that by dd!

@AllGonePeteTong1 I should also have said that dd is a far cry to how she was, largely as a result of better understanding the things that cause her anxiety, and having an ehcp in place. We were also told she wouldn't get one, but we fought for it and it has been a game changer for her. The EP's report helped school (and us) understand her so much better. The small adjustments they've put in place have made a huge difference and she's thriving.

Tell school you want to apply for one and ask them if they'll support an application. If they won't, you can submit it yourself. Be prepared for the LA to reject the application the first time around, and say you'll take it to Tribunal. The vast majority are granted either before it goes to Tribunal, or afterwards.

@Whatafustercluck Thanks so much for your replies. Your DD sounds so much like mine! It's really good to hear that things have improved so much.

The Senco at school said that they wouldn't be able to provide enough evidence of need for an EHCP. She suggested that if I apply for one myself, an EP assessment might be helpful first so we have some evidence to get past the first hurdle. What do you think - does that sound right? DM me if easier!

An EP assessment isn’t essential before requesting an EHCNA, but if you do want to get one first, make sure whoever you use has experience of writing reports for SENDIST in case you need to appeal.

Thank you @StrivingForSleep that's a good tip

A little late to the party but I was wondering if you ever got anywhere with your DD? Currently having the same issues with my DS (6)

@RNM1 - I'm the OP - Falcon is my new username. I'm happy to report that things are greatly improved. Since I posted, DD has received an ADHD and autism diagnosis. She's been seen by an Educational Psychologist, Occupational Therapist, got counselling from CAMHS and we applied successfully for an EHCP (thank you to everyone who encouraged we to do this). We've got a much better understanding now of her needs and she's got more support in place at school.

She still finds life difficult and the meltdowns in general haven't gone away. But she's able to wear clothes normally again. It is a huge relief.

At the height of her issues, the school took the approach of letting us send her in anything she felt comfortable in, which relieved the pressure massively. I've got it written into her EHCP now that this is an accommodation her secondary school will have to make where needed.

Good luck with your DS. Do you have any other concerns, or is it just difficulties with clothing?

Sorry I did have a longer message typed out but for some reason it cut it off, thank you for getting back to me. Yes my son is also diagnosed with ASD/ADHD so we are aware of his struggles but the sensory issues with the clothes would be the biggest struggle. I have tried all the seamless socks and pants and he does only wear certain clothes but even these safe clothes are a nightmare to get on every single day. He seems to require a lot of sensory input jumping rocking moving so I try to do this first but even then he gets so stressed out trying to put clothes on that he’s just completely lost it and it’s so hard to calm him down. He does have a statement in school and full time 1-1, the school are fine with him wearing anything he needs but it still doesn’t seem to help 😭 causes so much stress every day and every night!

Is he on ADHD medication? This made my DD's sensory sensitivities so much worse. We tried 5 different types and they were all the same in this respect. Taking her off it had the biggest impact in terms of improving the clothes issue.

No he’s not on medication! He takes melatonin for sleep that’s all, but he’s been taking the medication longer than the issues have been occurring and he would barely sleep without it. Once clothes are on and he’s had movement and distracted he’s usually fine but getting them on is the problem!

Has DS had a sensory OT assessment? And does he have ongoing OT input?

If DS has an ADHD diagnosis, have you tried medication?