Noise sensitivity - which specialist?

[bochead]

Right then which medical specialist do I need to diagnose/offically recognise the existence of a noise sensitivity?

It's been totally ignored on DS's statement so I need to appeal as it is his KEY issue within a mainstream school environment - he can't BEAR certain pitches/sounds.

I therefore need summat official cos the joint communication clinic (2.5 year wait) who diagnosed him as "borderline autistic", "does not have an autism spectrum disorder but does have autistic traits" made no recomendations in their report as to how to deal with this issue. This is just dandy as it means he doesn't qualify for any local support re how to cope with those "autistic traits" like a place in an asd unit or outreach help etc. (Funding?)

He saw an NHS audiologist on Monday, but this apparently not her area and she couldn't even complete the standard hearing test as he had a melt down.

I see my GP on Friday, but he's not the most proactive so I need to know what to ask for. Can anyone help?

I'd prefer NHS, but if anyone can suggest London based private experts that an LEA would take note of that'll do. At this stage I don't have the patience to be bounced from pillar to post re the help he needs much longer.

I was dreading having to go down the appeal route but it seems inevitable, especially as the fault here is at the hands of the PCT and not the education team.

I was going to say the audiologist but clearly not. I think in London you can go to GOSH for noise sensitivity testing but I'm not sure and they have to be 7 years plus I think. Round here its dealt with by a community paed with a specialism in audiology but I think its different where ever you are, typical really. What you are describing is called hyperaccusis. I have it and it can make life very difficult sometimes. I can't bear to be around the hoover some days and I can't be in the kitchen when cutlery is being moved in the drawer. It can be treated and I am much better than I used to be. I had got to the point that I couldn't be in the car with the children it was that bad.

Agree would have thought an audiologist but perhaps an OT with senosy processing experience

If you don't mind my asking HOW do you treat it? It's an "autistic trait", one of many that got him referred but the main one, not even mentioned in his statement. At least now I know what to call it so thanks. It was mentioned in his SALT reports but apparently they are not as important as the JCC report so the LEA over rode it? The JCC team want to retest him for autism in a couple of years, (cynical moi wonders why) but this can't wait 2 more years to get sorted.

My DD has auditory defensiveness and some issues about hearing or listening with other noises around...
We have been given blank looks when asking about testing such things though

Well in an adult (and I'm not autistic) they first of all did a hearing test. I actually have a slight loss mid frequency ranges. They then talked to me about what noises and situations I struggle in. They referred me to a councellor because in adults its a sign of extreme stress or worry. They also issued me with a noise maker, a little thing a bit like an in the ear hearing aid that made static noise. I started with it on the lowest setting and wore it as long as I could manage. As I got used to it I was able to wear it all day. Then I was to turn it up when I was no longer hearing it (which I was surprised did actually happen). This was all done in conjunction with councilling to address the stress issues. I was able to function normally and manage the car etc within 4 months and now I just can't manage a few daily situations. Its extremely normal for people with this condition to avoid all situations that is distressing. The noises that I can't tolerate actually hurt. I can't describe it any other way, it really does hurt. I do avoid the kitchen if dh is cooking or washing up. I rarely hoover, I sweep and mop! But I can go in the car again although I don't like it I do it and can manage long journey's now.

All my experience though is as an adult and I'm not sure if they would do the same for children.

I've been thinking whilst doing bedtime, what about an OT with sensory interest if audiology can't help?

An OT trained to recognise and treat sensory issues is a good bet, but rare as hens teeth apparently. Snowdrop is a centre in the west country that deals with sensory issues specifically, you need to google the name.

We are getting help/advice from OT for dd2's sensitivity to sound, they are working with the school to help her with things like assembely and being in the hall (she hates the echo sounds).

Sneeze- i will take a look at 'snowdrop' i have never heard of them , we are in the west country.