Hearing problems...

Over four years ago, we waited months for J to be 'seen locally and failed' in relation to his hearing problems.  We were told this was necessary and we had to be told they could not assist J as this would then mean a referral to a tertiary centre might be possible.  So, despite us knowing from the outset what was required and who J should see, this is how J was eventually referred to Royal Throat Nose and Ear Hospital.  The RTNEH had a specialist Paediatric Hyperacusis clinic within its Nuffield Hearing & Speech Clinic.  It turned out, as a result of his referral to this specialist clinic and talking to the staff, that tinnitus, hyperacusis and Autism Spectrum Conditions often go hand in hand.  Something that, when we'd mentioned it locally to "professionals", was met with raised eyebrows and their 'fussy family again' eye roll.

Another thing we learnt early on from the specialists at the clinic is that, contrary to what had been shouted in J's face locally, hyperacusis can be painful and this is known because adult sufferers (who appear to be more readily believable than a child) report it as 'feeling like a knife is going through your head'.  So, to the local 'professional' who got down to J's level and shouted in his face "don't be silly J, there is NO noise and it doesn't hurt you", you are wrong and your 'clinical manner' sucks.

Once referred to London, J undertook a series of appointments at the clinic, the first of which was a real eye opener as we all learnt about how hyperacusis felt for him.  We agreed an intensive treatment programme with the team and during late 2011 we attended fortnightly appointments at the Nuffield H&SC.  We all saw clinical psychologists and J initially worked with them to explain the problems he had.  There was a marked change in his ability to verbalise matters when he was told what the names of the problems he has, how the brain works processing sound, that he was not alone in having the difficulties and that they CAN be painful.

The reason we had persisted with obtaining an appropriate specialist referral was that, prior to treatment, J was completely uncontrollable and put himself at risk when out and about.  Problems were at their most acute when we used public toilets on days out as, if someone used a handdryer,  J would absolutely HAVE to escape the noise he heard.  If an emergency vehicle passed by with its siren on, he'd run away - anywhere, just away... His hyperacusis meant his body was taken over by its 'flight' response and that's just what he would do - exit/flee, without warning and run as far away as possible.

By undertaking a series of counselling sessions, which allowed J to talk through things and experience loud noises in a controlled and safe way (for him), progress was made.  He started with deciding on some words (a mantra of sorts) to write down and have with him in situations when he feared there may be a loud noise.  We worked hard to provide controlled exposure to all sorts of different sounds - hairdryer, vacuum cleaner, handdryers and so on.  It took weeks and J had anxiety charts to fill in and rewards were agreed (yes, they were all Lego!) for when he met his targets.  He liked the charts, targets and rewards.  The continued work with exposure to sounds was a chore, he didn't like it and it was a MASSIVE undertaking to complete the London clinic's treatment plan and attend for every appointment.

Slowly, very slowly, J was able to switch the vacuum cleaner on and off.  Then, he'd switch it on for 5 seconds, then 10 and so on.  Next he'd stay in the room whilst the hairdryer was on.   And so on. Tasks were agreed with J in advance and he not only had to repeat them, he had to work to remain calm and log his worry level.  Initially it was really small steps but, amazingly, after months of hard work, J was able to use a hairdryer himself, tolerate the vacuum cleaner and be far less stressed by hand dryers when out and about.  He now regulates himself when a siren sounds and will often say out loud "is that something I should worry about? No? OK. Carry on, it's all right."

J still has ear defenders (yellow of course!) which are shown at the top of this post.  We were advised that using ear defenders can make matters worse (as they may not be with J when he experienced a loud noise) and often they worsen tinnitus (or rather it becomes more noticeable as the background/white news is reduced).  However, J does take his ear defenders in his back pack to places where he knows there is going to be a short burst of loud noise - eg his disability sports day where the event's start is marked by a fanfare, played by a military corps on brass instruments, in an enclosed and echoey sports hall.  He wears them for as short a time as is possible.

We know J has sensory processing difficulties which together with hyperacusis and tinnitus can make visits to busy places such as shops and cafes unpleasant.  Add to this his challenges with his autistic spectrum condition and his associated/additional communication difficulties and it becomes easier to understand why the 'simple' act of asking for and buying a drink is, at the moment, impossible for him.  What the setting brings to J is a seemingly overwhelming set of "everything" that, in his own words, "paralyses me with fear and worry".  He has been working on a chart to share with his therapists in an attempt to find a way/provide him with the means to buy a drink and his favourite cookie.  He WANTS to do this.

When he's made progress, and I am sure he will given time, then we will blog more about it... and perhaps share the whole of this chart (which he worked on today and sparked an interesting twitter chat).






NOTE - The audiology professionals' magazine Audacity has an article on the clinic J attended here and how it has a programme to assist with childhood tinnitus (see page 26 onwards).

We also blogged about J's tinnitus here.