Support for teen with worsening sensory issues and misophonia

[fifteenpercent]

Dd2, 15, has always suffered with sensory issues, when she was younger things like socks not feeling tight enough, bed covers needing to be straight.

As she's got older, she has learnt to deal with most, but is finding her misophonia in particular is getting worse. She wears her headphones most of the time and can't sit near people when they are eating. Recently she has also had issues with seeing movement, for example someone's arms swinging when walking, someone scrolling a phone.

We took a train journey recently, the heat, noise of people eating, noise escaping from headphones etc. all got too much and she became very upset, when we arrived at our destination she had to take herself alone to her room for the rest of the day.

At school she has been given permission to wear noise cancelling headphones during exams, but unfortunately, although these tackle the noise issue, she can't bear the feel of the ones provided, and isn't allowed to take her own.

I was wondering about taking her to see a specialist who might be able to give advise on some coping mechanisms, but to be honest I don't know where to start.

Any advise from anyone who has been through similar much appreciated.

Thank you.

Why isn’t DD allowed to use her own noise cancelling headphones?

Has DD been referred to a specialist? For example, if you can get a referral UCL’s audiovestibular team cover misophonia and are brilliant.

Has DD had a sensory OT assessment?

What are her wider anxiety levels like? Coping with sensory difficulties is often harder when wider anxiety levels are high.

I think her hormones are all over the place at the moment, which is making her more stressed than usual, which I do feel is exasperating the sensory issues.

She has never been assessed, I wasn't sure where to start, presuming just with a GP appointment to ask for a referral? This is mainly why I started the thread, our GP isn't great in general, so was wondering what I needed to google to find a private specialist nearby, I'm pretty clueless to be honest.

She's currently under a paediatrician for various health issues, but I'm wondering if they're actually linked to her sensory issues too, in that she's less able to ignore minor aches and niggles.

The school say she has to use either loop earplugs, which Dd has tried in the past and says they hardly cancel the noise at all, or the over head ear defenders provided by school. Their argument is these have been checked ensuring they can't be connected to wi fi etc to avoid cheating in exams.

I would start by speaking to the GP again and raising it with the paed. They can refer. Unless travelling is an issue, rather than looking for someone nearby, I would look for a specialist. Personally, I would look at UCL.

Alongside that, I would look at sensory OT. Not all ICBs commission sensory OT on the NHS, though. Even if your area does, an independent assessment is likely to be more in depth. If you want to post roughly what area of the country you are in, I will try to post some suggestions. Although many people travel for a good sensory OT - not all OTs have training, qualifications and experience covering the sensory side of things.

Some autistic women find the pill helps with the hormonal rollercoaster. Some take a couple of packs back to back to help them cope with the sensory side of periods.

The school should allow any non-electronic headphones/earphones. In some cases, electronic headphones/ear phones can be used as long as they are not connected to the internet and not Bluetooth enabled. DD could even listen to music/white noise. Have a read of JCQ’s guidance, then request to speak to the school again.

Thank you, this is all very helpful and much appreciated.

We are in Harrogate on the off chance you know any sensory OTs in the area?

I would also be willing to travel to London, so will see if I can get the GP to refer to UCL.

Not in Harrogate itself but for an independent OT, you could look at Rachel Derry in York, Cait Phillips in Skipton, Alex Hermann is in Leeds, Victoria Cureton-Favager in Wakefield, Shelly Reid is in Doncaster but will sometimes travel to N.Yorks, and Kerry Delaney is in Barnsley.

If you are willing to travel to London for OT, you could look at Aniesa Blore, Melinda Eriksen, Diana Pierags and Moyna Talcer. Although that would probably only work for an initial assessment rather than ongoing input.

Wonderful, thanks again for your help!