Auditory Processing Disorder (APD) - advice and where to refer?

[sparklingharbour]

Hello,

Can anyone advise me on APD (Auditory Processing Disorder) please?

I would like to have my 8 year old DD referred urgently to see if she has it, and wondered where I should ask to be referred to?

We're in East Sussex.

We got an Ed Psych report for her last year as she struggled to join in in school, and the Ed Psych picked up on evidence of difficulties in Auditory Processing.

She often says "what" when we talk to here, we constantly have to repeat ourselves, and her speech is just a bit "odd" - always has sounded young for her age (although she has a great vocabulary) and misses some sounds in words. Her spelling is terrible.
She was also diagnosed with dyslexia.

Her school is useless - its an independent and they've failed her big time. We will move her but in the meantime we need to see what's going on.

A private assessment by a paediatrician recently diagnosed her as autistic but we are very unsure about this. It wasn't multi - disciplinary and didn't describe the girl we and all those who know her well see.

We really want to explore the APD and I want to ask the GP for a referral.

Does anyone have a recommendation as to where to get referred?

We see GOSH needs a tertiary referral. Is this the best or is there another centre who will accept a referral from a GP?

Thanks!

[Thisismynewname123]

My dd got a diagnosis of APD from GOSH. She had a referral through the community peadiatrician. However, we had long delays because Dr Srirama has been off sick and I've heard that they're not accepting any more referrals because of this. We saw a different doctor there who was coming in one day a week at the time to get through the referrals to Dr Srirama that had been delayed due to his illness. I don't know what the current situation is. That was back in November. This link may help:
apdsupportuk.yolasite.com/resources/APD%20testing%20UK%202018.pdf

[ASDMum1973]

Or you can pay and get it diagnosed by a private Speech and Language Therapist (S&LT). Given that this will most likely lead to a requirement of weekly Speech and Language Therapy in school, and therefore an EHCP, you will be best placed to get an independent S&LT who has experience of going to SENDIST Tribunal. There are lots of really good ones. If you DM me I can give you a list. A good one will not only assess your child but will come and observe the child in school so they can really see the impact of APD. My son has APD and has S&LT therapy 1:1 for 30 mins once a week.

[Thisismynewname123]

I was told that APD is not a reason in itself to be able to apply for an EHCP. S&LT don't assess and diagnose APD. The GOSH audiology clinic was the gold standard, but as they are no longer carrying out assessments, you will need to contact other audiology departments. APD is considered a hearing impairment. At the GOSH assessment they spent around 3 hours carrying out various hearing tests (actual hearing has to be normal levels, for there to be a diagnosis of auditory process disorder). It is separate from SALT.

[ASDMum1973]

You'll get told anything by an LA or by a school who doesn't understand SEN Law, the usually respond to fit in with LA policy. If your child needs Speech and Language Therapy then it MUST be specified (how much) and quantified (how often) and also clear detail on who it will be delivered by must also be included (so they can't call in the cleaner!).

Lesley Wood and Juanita Hurley are two excellent S&LTs who write clearly specified and quantified reports. That's really what you need because the LA Speech and Language therapists rarely specify.

You must bear in mind that many local authorities are giving a default "no" response to a request to assess for an EHCP but that over 90% of parents are successful at getting this overturned at appeal...the appeal is a paper appeal, not a hearing at this stage. You would need to have evidence of need though and therefore if your son doesn't have a diagnosis from the NHS you would need evidence supporting your request.

IPSEA.org.uk have some really useful information on their site. I personally avoid SENDIASS but some are good. I just had a bad experience when I lived in Hampshire and also in Surrey.

[Thisismynewname123]

But the OP wasn't asking about SALT or an EHCP assessment. She was asking about APD, and where to get an assessment if not through GOSH.

OP - I have reread your post and realised that you mentioned that your DD has a diagnosis of ASD. I was told (by GOSH, at my DD's assessment) that they will not assess if a child has a diagnosis of ADHD or ASD, mainly because of issues with concentration in the number of tests they carry out. As is happens, at the time by DD was waiting for her assessment of both ADHD & ASD, and she has since been diagnosed with both. I was upfront about this at the assessment, but they concluded that she concentrated well during the assessment so they were able to diagnose. There was a clear difference between the scores on her actual hearing tests, as compared to the APD tests, so concentration was not the issue.

[ASDMum1973]

As the child is in an independent school I think the parents best bet is to go via GP referral.

www.nhs.uk/conditions/auditory-processing-disorder/

[sparklingharbour]

Hello, thanks both, this is brilliant information.

I've asked the GP for a referral to Nuffield so fingers crossed.

Her normal hearing tests were done around a year ago - should we have them repeated before the APD assessment?

ASDMum73 I would love a list of SLTs experienced in this area please, especially if they are in Sussex although we can travel for the right one.

I wonder how long a referral takes?

Should we just go to e.g. Southhampton for a private diagnosis (I saw they do in that document you gave me Thisismynewname123

[sparklingharbour]

Re ASD, this was a private diagnosis and wasn't multidisciplinary. We don't have to disclose it as such and won't for now, as we are not at all sure that it fits and we don't want it to rule out her getting tested for APD which seems more her issue to be honest!

[Thisismynewname123]

My dd's "normal" hearing test was well over a year old. They were fine with that, assuming the results were normal, as they re-test their hearing as part of the assessment anyway. They letters for the appointment did mention getting her ears syringed before the appointment (although I forgot to do that and again, it wasn't an issue as her hearing tests were normal).

I honestly have no idea about a private diagnosis, other than reading that document that I forwarded on! I hadn't even heard of APD until the paediatrician recommended the referral. Good luck with getting a referral through the GP!

[Zodlebud]

My DD (5) has recently been diagnosed after two years.

We had been under the care of the local authority SALT and audiology teams but apart from six months of glue ear everything was classed as in normal parameters and we were discharged from both.

It was evident though that my daughter really cannot hear a thing in noisy environments so I took her back to my GP.

He referred us to a specialist ENT consultant who then referred us into a private APD consultant.

Note that only an audiologist can test for APD and even then they need special training so I would get a referral instead of finding a private clinic yourself. No need to get further hearing tests done - they repeat them all at an APD screening.

[Zodlebud]

The struggling to join in part has been the hardest aspect of it for my daughter. She often plays by herself in a specific area of the classroom but this is her coping strategy and she is always happy there. Forcing her to play with others can cause anxiety - she just needs to take things at her own pace.

Also, APD is not a learning disability. It doesn’t affect intelligence in any way but it can be a barrier to learning.

Honestly, my daughter has come on so much in the last few months after just a few adjustments at school. The diagnosis has been key though.

[sparklingharbour]

Thisismynewname UCL accept referral from a GP so fingers crossed!

Zodlebug sounds like.my daughter in the not joining in front it's brilliant she was diagnosed so young. The independent school just hasn't been good for us in terms of accessing support and proper advice but what can you do...start where you are!

[sparklingharbour]

It's great to hear I might not need to get he hearing tests done again as we waited forever for these!

[Violet44]

My son has been to GOSH and seen audiologist in the summer, was referred via pediatrician. He passed his hearing test but then went on to score badly in other tests indicating a problem but because he was very fidgety it was hard to determine, an we were supposed to be going back to have tests repeated but appointment got cancelled because of drs long term sickness.

We also went down autistic route to begin with but he had ados and didn't get diagnosed.

Just wondering those who have got diagnosis of APD, how has it helped and what adjustments/ help has been needed?

[Faultymain5]

Our GP refused a referral straight to GOSH or UCLH and sent a letter to our school. There is a long waiting list, and our school are happy to sit and wait. My daughter appears smart, doesn't have dyslexia and has short term auditory sequencing issues. We were told this when she was 7 years, she reads often, but her spellings and memory are still shot. She can do a spelling test today and not recall how to spell the words in a couple of days.

Teacher last year dealt with her differently than this year's teacher and there was much improvement (so don't think she is especially below average), but this year not so much, seems like regression in certain areas . I've said to DH to get her tested privately, but he thinks we're throwing money at a problem, and that I will keep throwing money at it to get the answer I want. I just want to rule out every possibility. The auditory issue was mentioned in the dyslexia report we had done nearly 3 years ago. She was supposed to grow out of it, I don't see much change.

[Claennister]

If you are happy to pay privately and travel, the Auditory Implant Service in Southampton has a multi-disciplinary APD diagnostic service. Call and ask for an information pack, it has a pre-screen questionnaire and lots of info about the process.

I am still thinking about whether or not this is a useful diagnosis for my daughter to have, depending on what other things they come out with next! Locally we have been told they "Do not see enough convincing research evidence that APD is a distinct disorder" and on that basis it's perfectly legal not to have a clinic for it and not to diagnose it at all, no matter what issues the child has. I'm not sure what weight an out of area private diagnosis will have in an area where they "don't believe in" APD and it's a huge chunk of money for us to potentially just come away with a report saying she has APD. If that isn't going to lead to concrete outcomes, it's just buying a piece of paper.

[Faultymain5]

Thanks for the info though.

[sparklingharbour]

Sorry FaultyMain5 I just saw this reply now!!!!
This is a shame that the GP refused the referral. I think the fact it was mentioned in the dyslexia report means they should definitely refer. Might it be an idea to go back and ask to see another GP or even complain as it seems unreasonable?

Thanks Claennister! I've been referred to the UCLH now thankfully so fingers crossed we'll have an appointment soon. It is a balancing act as to whether the money is worth it but can't you push for a referral to UCLH? For us we think it's worth having a diagnosis as it will help our daughter to understand she is not stupid and will empower her to look for the help she needs and also it's a helpful signpost for people who have to deal with her.