Deafness and ?ASD, can't stop worrying

[Twoshininglights]

Sorry for what is likely to be a long post but I was hoping for some words of wisdom. My twins were born 3 months prematurely and my son spent 15 weeks on the NNU. He had a number of problems but essentially was discharged well although failed his hearing screening. Over the last 2 years he has had many tests as his condtition is rare and not straightforward. He received bilateral cochlear implants on the 7thjune at an age of 23months corrected but 27 months actual age.

I want to start with the positives as I love him and he is such a wonderful boy. As a baby he was a joy, engaging, smiling/laughing all the time. We saw a lot of healthcare professionals and everyone fell in love with him and he was a real flirt. All our hearing specialists said how wonderfully communicative he was and visual.

Over the last 6 months he has developed some very odd behaviours that seem to be getting worse and I am not sure what to do about it really.

He was seen by the neurodevelopmental paed at age 15 mo and also 23mo corrected. Her statement to the students was 'this child is obviously not autistic' going on to explain why not. I should say that his gross and fine motor development is not delayed and in fact above average. He has had Baileys and Griffiths done both of which score him in normal range cognitively for tests that do not require hearing.

He attends nursery 2days a week with his twin and seems ok there but does not really engage with the children other than his sister. He has repetitive behaviour with both looking at his finger out of the corner of his eye and also sometimes objects. If I distract with tickling he is fine but it i stop him/take toy away he has a tantrum and bangs his head. He can wander quite a bit and difficult to sit down but generally is far better with toys if you sit with him. In the main he has good eye contact, and certain ly does with strangers but will often completely ignore me if i try to get his attention. He loves to chooses a book and sit with me even though he can't hear it, he points for things he wants and can follow my point. I am the only one who has really signed with him and he definitely has some understanding and can copy signs. He is happy to copy facial expressions, postures and overall is loving, cuddly and gives big kisses. He will play hide and seek behing the curtain with his twin. He does not however really wave (a couple in the last week or so).

I guess my really long winded post is trying to ask if for the time being I should put his behavioural problems down to his hearing or try to see someone else? He has lots of good social qualities but I can't help obsessively worrying about the repetitive self stimulating with his fingers/objects. Any advice gratefully received if you haven't got too bored to read the end of the post!

Is the noise too much at nursery? Even with implants you do not hear normally (or so I understand). A friend had them put in in his late 20s and found for years busy situations difficult to deal with as he wasn't used to the level of noise that we take as normal.

I'm on the way to work now, so can't reply properly, but it does sound like something a professional could and should investigate, but the deafness-induced language delay will make it harder to tease thing out.

My DS2 is deaf, and behaved a lot like this, but with more sensory seeking through touch & wild movement. He doesn't any more, thanks to a talented OT who gave us the tools to help regulate his behaviour. I'll have more of a think today.

My 6yr old is deaf and has non verbal ASD. There are definite overlaps with what is deaf behaviour and ASD. Either way he will struggle, and it is probably a good idea to see a developmental paediatrician to be able to talk through your concerns and maybe either start a diagnosis of ASD or to help get you heavily involved with a Specialist Teacher for the Deaf.

My DS goes to a Special School, he was at a small nursery with 16 children per session before beginning Reception in a mainstream. His was the year when the school decided to double their intake from 28 to 56 children. He lasted a month before he started to refuse to go into class. By the Easter holidays we were transferring him to Special School.

There is another poster on mumsnet callex lottie jenkins who has a teenager who is deaf and has Asd. She is sometimes on the chat board, you could message her.

Good luck

thank you for all your replies. Uggerthebugger, ds also has some sensory seeking and wild movement issues at times.

We were due to have their 2 year corrected Baileys about now but don't seem to have had an appointment. I will chase that again. Actually our OT who does them is very good and I mentioned some concerns in January at the 18 month one, I also questioned if he would need sensory integration. She was reassuring at the time, but hopefully might have the assessment soon and push to bring the paeds appt forward (she had made it for a year when we saw her in April).

DH is unkeen to mention too much as he doesn't want him to have a 'label' but I would like him to reach his full potential and feel any help he could get now would be beneficial (even if that's just for making me feel better!)

Are you getting specialist therapy to make the best of his implants. deafness can lead to all sorts of issues if not supported. We found the team at auditory verbal amazing and worth contacting.

I think it is wise to be able to access the help whilst ds is younger, a dx can help to open doors that would otherwise be closed.

Our early dx of asd came with their assurance that if we felt it was no longer necessary then they would remove it. It is also reviewed yearly.