Here are some suggested organisations that offer expert advice on SN.
DD can't listen(27 Posts)
Long story really and have a thread setting out details here.
Basically, dd just does not process what is said to her. She can ask the same question in rapid succession 3 or 4 times and only when it is pointed out to her that it has already been answered will she stop and think about what the answer might be. She does not really "get" what goes on in TV programmes and films. At school, her work shows that she clearly does not understand tasks given to the class as a whole (she will only complete a fraction of the work required and often do something slightly different). She appears to get by most of the time by copying other children.
She has just finished Yr 2 and will be 7 in Aug. Her SATs results are average (2as and 2b). Her teacher says that there is a problem and suggested we talk to the GP as otherwise, because her attainment is average, the school will not do anything.
I wrote a long letter to the GP and went to see him last week. He said that it sounds like she is autistic except her social interation is generally good (although she is very shy). This knocked me for six - not what I expected at all. He has referred us to a pediatrician.
Dd will not engage with the pediatrician at all. She is shy around adults she does not know and will absolutely and totally refuse to acknowledge that there is any kind of problem. She will sit in silence the whole time.
My question to you is how to deal with this. What should I say to the dr? What outcomes can I expect from the referral? The mother of her best friend is a consultant pediatrician and I wondered if it would be worth telling anyone we saw to ask her about dd's social interaction if they need to know about it as she sees her in a normal environment?
I am not sure what while happen with the pead. I went to the docs and was refered to a pead and the pead made and then cancelled the appointment saying it was not in her field and referred my DS to camhs. However when a request for statement went through (is still going through) the authority made an appointment for DS to see a pead after all
They basically just ask you questions about early childhood (from birth) toilet training, walking, talking. What situations cause her anxiety etc and observe your dd. She/he will talk to her but it is just general chit chat and ds was asked to write his name with a pencil and copy some shapes she drew on a piece of paper (cognitive/motor skills I think). He was weighed and height measured and that was that.
So I would say some peads diagnose or refer for more help in some areas and some dont and it would be camhs you need. It all depends where you live.
If your DD wont talk to her then dont worry about it as it is clearly one of her issues at hand and you can tell the pead that. Along witht he repetitive questions (my DS does it all the time). She will gather much info from you and observe your DD on the sidelines.
Well worth getting this looked at, yes. My own ds (now grown up) has a short term memory problem in addition to his other challenges, and will totally forget anything but the shortest of instructions.
Asking questions repeatedly can also be a sign of autism, as can forgetting what a word means if the child has a different way of understanding words.
For example I think in pictures, so I know exactly what something is if I see a picture of it. But the word for it is stored somewhere else in my brain...and I have to wait for my brain to go rummage through all the other words to see if it can find that one....then see if it can match up with the word with the picture. It's much slower. I've become a lot faster with age and practising, because my brain has added in extra wiring to cope with it (if I believe the brain scientists). I haven't got much of a clue what's happening in a lot of TV shows/books etc unless it's very visual factual stuff.
Try her with visual instructions and see if it helps - print off piccies of standard things to do and get her to follow the picture sequence and see if it works better than instructions given in words...?
That's interesting Amber. She can forget what words mean and will for example use "hot" instead of "cold". She also does much better with visual learning (eg if I show her something in numeracy she gets it but a verbal explanation would just not go in).
I guess I was just shocked my the reference to her being autistic. There was at one point much discussion about whether ds had aspergers as he just does not get social norms and that was not a surprise to me at all - it completely gelled with how I saw him. I guess I just don't see dd in this way and feel like someone has slapped me in the face with this suggestion.
DS will follow instructions. IF given directly to him. IF he is in a crowded classroom and the teacher has instructed them to take off shoes, get pe kit on, line up at the door, girls one side and boys other etc Then he will just stand there or wonder around. He needs one instruction at a time and directly given to him face to face to get all requests done.
Also watching TV is a nightmare as we found he is not actually looking at what is happening in the programme but what is going on behind the scenes iyswim ie. whats the picture of on the wall, why did they use that door when the other was closest, they got a cat why? So he couldnt tell you anything about what happend
Thanks coff33. Dd will chat happilly to people she knows, but will not talk much to strangers. She is also very, very defensive when people talk about her and will completely disengage from a situation where she thinks she is the topic of conversation. I have wondered lately if this is some kind of defence mechanism as she too thinks there might be something wrong.
Coff33 - what you say about the TV is quite like dd. She will absord much of the detail that I just won't see - like who is wearing what in each scene - but cannot relate the narrative back to you.
Temple Grandin movie - how many of us think in pictures and have minds more like Google Images than anything else...
Amber - I am terrified that this will make her unhappy and that I have failed her by not doing something before now. Can I ask what strategies might have helped you and your son absorb more verbal information?
Hi, Have a look into auditory processing problems. Sounds very similar to what you are explaining. I have similar problems with my son. We are just about to start sound therapy/AIT which from what I have seen on here, so people have got great results from it. Tho you wont get it on the NHS :-(
Keep pushing for answers. They want to get rid of the ones who keep pestering them, wheras if you sit back its easy to be ignored. My son has been to see every professional possible and 3 years still not diagnosed! (suspected DCD/Dyspraxia) They are going to make thier conclusions in September/October at next assesment.
Thanks Black - someone on my other thread mentioned auditory processing disorder. I mentioned it to the GP and he looked at me as though I was a complete loon. It does seem like quite a good fit though - dh describes her as having a kind of aural dyslexia.
For ages I have told myself that I am over-reacting so I am finding it hard to take in at the moment and know in my heart I should have done something years ago and keep thinking how much more it would have helped her if I had. Dh rightly tells me that this is pointless as we go from where we are.
The repeating questions and not seeming to register the answers is very typical behaviour for my ds who has Asperger's. auditory processing disorder was also flagged up for him but the testing didn't go much beyond audiologist at local hospital checking his hearing to rule out any physical cause. I think to have APD tested properly you would have to be referred to a specialist centre - there is one at GOSH and may be others.
It's also important to remember that girls may present differently to our standard perception of a child with autism.
I would ask your gp to refer you to camhs as well as or instead of the paed referral as they will have the expertise to judge whether or not your dd meets teh criteria for an ASD diagnosis.
One thing we found really enlightening in understanding ds' problems with questions and listening was when camhs did the WISC iv cognitive assessment tests - they look specifically at things like processing speed as well as more standard intelligence testing like reading comprehension and number recall. Although your dd is performing up to the expected standard at school academically it may well be that her difficulties processing audiory information are hindering her progress and for example ensuring that she has instructions in written form would help her enormously.
Following on from that we too were told that ds wouldn't be eligible for extra help as wasn't doing badly enough academically but this is a common misunderstanding among teaching staff as there are many other criteria which make a child eligible for extra support in order to access an appropriate education. It's well worth looking at the SEN Code of practice to see what help your dd is legally entitled to.
link here: media.education.gov.uk/assets/files/pdf/s/sen%20code%20of%20practice.pdf
If you decide to request a statutory assessment of your dd's needs, which you can do directly as a parent you don't need to go via the school, there is good advice on sites such as ipsea and sossen.
Thanks Pink, I will look at the Code of Practice. I have already written to the school explaining that I understood that special needs are determined by reference to the individual child not be reference to some hypothetical norm. If dd needs help to perform to the best of her ability then it should not matter whether that level is at, above or below average. The head (verbally) agreed but whether that translates into something more, I have no idea. I do know that if I tell them dd might be autistic, they will laugh at me.
GL, it's just sheer practice that made the difference for me.
If a word has two meanings, my brain will try to picture the meaning it's most expecting. "I walked into the bank". Do they mean a building, or did they collide with a river bank? Most people can guess the most likely meaning from the surrounding words. Not me.
Dolfrog is the expert on APD, he has it himself and so do his family. It's fairly unknown by GPs in this country but definitely becoming more recognised.
Don't worry about the ASD, it's early days and whatever 'label' you end up with the important thing is that it will, hopefully, open doors to support. As Indigo said, she's not changed, she's still your lovely DD. It is generally considered harder to DX ASD in girls as they are naturally more empathic and social than boys which can mask the more obvious symptoms. You've come to right place, lots of experience and people willing to share it, here.
Thanks Ellen - I just can't take it in. Ds yes, but not dd. I start crying every time I think about it. I know she still is who she is, but now I think that the world may perceive her differently. I think her friends may not want to be friends with her if they know - I know this should not make a difference but I also know how narrow minded people can be.
I also feel like it is all my fault. How can I have done nothing to help?
Oh, love, you know it's not your fault, really. And if she's already got some friends they won't suddenly see her differently. My DS has ASD and thinks he has little need for friends, but his whole class are really lovely and supportive of him. (With a couple of exceptions, but their loss!) And if she's come so far without anyone suggesting ASD, even if she has it, it'll be fairly mild. Amberlight, on here, is a fantastic example of how it can be, she's married with children and really lovely and helpful to the rest of us.
It is a really upsetting time when people actually start taking your concerns seriously, there's always that hope you've been reading too much into things. So do allow yourself to be upset, we'll always have and [chocolate] and proper empathy for you here.
Ellen - thanks! That's exactly what I have been hoping - that its all in my mind and there is no problem really. Now someone externally has said that there is, it is like the problem has just arisen and I am just having to deal with it. Everything I thought about her no longer seems to be relevant (an over reaction I know).
Well, of my female friends on the autism spectrum, nearly all are married, most have a family, nearly all have good jobs, and all have friends of some sort. We went through the 'system' when there was no treatment, therapy, understanding, training or anything else, so logically it'll be easier for anyone diagnosed now.
complete thread hijack... how are you doing amber?
<alright if you like that sort of thing . Last of 8 chemotherapy sessions on 8 aug, surgery 6 sep, then lots more fun n games for another year...to be honest I'm exhausted. But it's working, which is the main thing. Thanks for asking >
Auditory Processing Disorder (APD) is a listening disability , or not being able to process all that you hear, all sound based information which includes speech.
And as EllenJaneisnotmyname has mentioned all of my family have me, three sons and my DW.
APD is a recently identifies condition back in the 1960s in the USA and only officially recognised in the UK in 2004, when the Medical Research Council (MRC)published their first APD pamphlet.
We were asked by the leading APD professionals in 2001 / 2002 to create a parent lead UK based APD support orgnisation to help the MRC win government fund for the first 5 year APD research program. Auditory Processing Disorder in the UK (APDUK) was born in 2002 / 2003 and the MRC got their funding in 2004.
According to the MRC 10% of children have some degree of APD, which asks the question how have they been diagnosed or recognised in the past. APD can mimic many other already recognised conditions, such as ADHD, and Aspergers Syndrome. APD is also one of the underlying cause of the dyslexic symptom, so many who have APD may have been diagnosed as having dyslexia, but have not gone further to identify their underlying cause of their dyslexic symptom.
Link many cognitive information processes, they are all part of a childs natural development, and children only stop growing out of purely developmentall issues at the age of maturation, 7 - 8 years old. this why APD assessment centres will only accept children over the age of 7 years for assessment, unless there is a family history of APD. APD has a genetic origin, although some may acquire APD as a result of a severe ear infection such as Otitis Media with Effusion (Glue Ear), and some children may lack a natural immunity to such as ear infection, for instance children who have Downs Syndrome.
APD is about not being able to process all that you hear, and living wiht APD is about trying to best guess the sound based information we have not processed to try to make sense of what is going on. Those who have APD will have problems following conversations, and following verbal instructions. Many who have APD learn to lip read at a very early age, and also be very good a processing body language to help fill in the auditory communication gaps. We have poor auditory memories, and poor sequencing skills (the auditory and sequencing control areas of the brain are closely related) Which means we can have problems finding the correct words when we want to use them, and getting the words out in the correct order can be a problems at times. The sequencing issues tend to be more of a problem with regard to spelling and getting the letters in the correct order.
Those who have APD have problems with low levels of background noise (pink sound or cafeteria levels of background noise), Dichotic Listening, so identifying speech with that level of of background noise is a problem. Those who have APD have problems processing the gaps between sounds, especially the sounds which can make up words, and the gaps between words in rapid speech. Which means that those who have APD can not use phonics, and although I understand the concept of phonic blending, to me it will always remain an abstract concept and something i can not use.
Currently Great Ormond Street Hospital is the APD assessment centre in the UK, and hopefully there will be more centres opening soon around the UK as Clinicians are trained to use the new MRC APD diagnostic battery of tests. And the UK APD Steering Committees recommended Multi Discipline Assessment teams (Audiologist, Psychologist, and Speech and Language Pathologist) which can produce a true overall APD assessment.
I hope this helps
You could be describing my daughter at the same age. She is now nine, and was diagnosed with Asperger Syndrome last year. It's been a long haul getting the formal diagnosis since we first noticed there was something not quite right when she was 4 years old. She was referred to the special needs co-ordinator at school, who then recommended her to the local childrens' services unit for an assessment ... who then suggested speech therapy and 'circle time'.. on and on it went and it was never properly pinpointed until she moved to a new school and got so badly bullied and was regularly put out of class for not paying attention, that I went bananas and forced a meeting with the headteacher, senco and educational psychologist.
You could go to your doctor directly and ask him/her to refer her to your local childrens and young adults mental health services.
I'm not surprised you're feeling anxious. We had this over our heads for years and still the formal diagnosis knocked me for six.
BUT -- it is really worth getting it checked out and diagnosed (if it comes to that) early on. My daughter suffered years of bullying and feeling stupid and badly behaved and it was a massive relief to her to discover that she wasn't. The school then kicked in immediately post-diagnosis to give her lots of support and encouragement.
If it helps at all, or gives you any useful context, I've been blogging about it here: http://courage-is.blogspot.com.
hmm link not working, try www.courage-is.blogspot.com. x
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