...Suspecting Autism continued

[runikka]

Good morning

I hope you dont mind me firing questions but I dont feel that I have anywhere else to turn at the moment. I spoke to HV yesterday re Daniel and they said that he would need a development assessment from a consultant as they weren't qualified to give any further diagnosis. To be honest I didn't expect them to but just wanted to speak to someone in case my fears are irrational. Instinct tells me they arent but I am just working myself into a real state at the moment.

A couple of questions, the consultants appointment will be arranged within about six weeks so prob after Christmas now which is ok. The speech and language referral means we get added to a waiting list of approx 4-6 months. Has anyone gone down the private route to get their child assessed or is it just a case of being patient for the NHS?

Also, the real thing bugging me currently is getting Daniel to respond to his name. Now I dont know if he genuinely doesn't understand that it is his name or if he thinks he is about to be told off/stopped from doing something and is ignoring me. I have heard of CD's used in chant music that familiarise a child with their name. I was wondering if anyone was aware of any good methods to teach a child to respond to their name.

Many thanks
kirsty

Of course it's okay to ask questions.

I haven't gone down the private route myself but I know that there are a few people on here who have.

I'm still having trouble with getting my 2 to answer to their names. They tend to block out noise around them because of their sensitive hearing and so they don't always here when people are speaking to them. I usually touch them on the shoulder or wave at them while saying their names. That way they can use their other senses and not just their hearing.

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Hi Runikka
This site was a godsend for me when I was in the same position - ask away!

We were in a similar position when DS2 was 2.5. We got a referral to a paed but he was a locum, diagnosed 'lang delay with autistic traits' and sent us away for 6 months. We went to BIBIC (www.bibic.org or it might be www.bibic.org.uk) who were brilliant. They don't diagnose but they give you lots of help with things like sensory probs, which can influence things like responding to name. We just found them brilliantly supportive (as have others on here) at a time when we were also in a state!
They are a charity but you have to pay a proportion of the costs of an assessment - however there are bursaries you can apply for and they aim not to turn anyone away for financial reasons.

DS2 wouldn't respond to his name at all until he was at least 2.5, probably nearer 3 and he still doesn't all the time. I did a sort of chant with him which I adapted from the Cbeebies programme RazzleDazzle. (you can tell how I spend my days!) It's kind of hard to explain without demonstrating, but I would get him to sit or stand facing me and then chant very emphatically and rhythmically
'What's YOUR name? - HEN - ry' accompanying each syllable with a clap and then putting my hands on his chest for the name part.Then I'd do
'What's my name? - MUM -my', clapping each syllable and putting my hands on my own chest for 'Mum- my'.He liked it and it did seem to get him to focus on his name a bit more. After a while (a LONG while) I could pause before the names and he'd say them. He still doesn't say his own name or Mummy spontaneously but I think he's nearly there - he definitely knows who they refer to now. (He's 4 by the way)

Reading this back it sounds like gobbledegook . You won't ask any more questions if you get exhausted just reading the answers

Many thanks for your replies. Socci: excuse my ignorance but what does CAT mean? lol

One last question, I have been doing some research today and noticed that sleep problems can be present in a person with Autism. Is this a classic symptom of Autism/ASD or like many others present in some but not in others.

That aside, I think I reached crisis point this afternoon and have decided to take a step back, wait for the referral and just enjoy my little man. Putting him to bed just now he gave me his rendition of "Old Macdonald" and it was very cute lol Daniel though giving me plenty of grey hairs at the moment, alongside his baby sister, are the light of my life.

I guess I'll probably have more questions over the coming months so I hope you dont mind me becoming a regular.

Take Care
Kirsty

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Looking forward to you becoming a regular (that may sound wrong- I hope you are regular for a while and then can go off and never have to think SN, but am looking forward to hearing more about you is what I mean).

Sleep problems are common but not universal. DS1 sometimes has sleeep problems, sometimes now- when he does it may go on for a few months of just a week or so.

Sorry no time to write more at the mo- pizza delivered.....

Ds2 seems to need very little sleep. Before we started with the melatonin it was common for him to be wide awake at midnight and then wake up throughout the night. He still needs less sleep than most children of his age but the melatonin has made a huge difference.

Ds1 doesn't have too much of a problem with sleep although he regularly wakes up during the night.

It's one of those things that varies from child to child.

I have just emailed bupa too to enquire on a private assesment for DT1.

We have had CDC appt and now have to wait for further assesment to find out if we will get refferal to autism specialist.

He is currently on melatonin too for very poor sleep.

Fingers crossed we get the quote soon

just contacted bupa who sadi we need to get a refferal from gp 1st. I thought we could go direct????

Hi again

I think for all Bupa treatment you need a referral from your GP. I know for our little ones eye exam we needed one. It's a pain isn't it. I am still debating about going down that route.

To all parents of little ones diagnosed, did you know fairly early on that something was different. Daniel babbled quite early on, about 8 months I think and has continued to babble to this present day. He said a few works at about 14/15 months and it was only when his sister came along at 18 months that we noticed his speech drop down. At first I thought it might be a case of regression down to being put out by this new litte person vying for mummy and daddys attention. Six months on I am guessing that this is probably not the only reason but I dont know how much of an impact it can have on some individuals.

I am feeling quite guilty at the moment because Daniel has always been happy playing by himself. I have to work from home so the fact he does has at times been a godsend. Part of me feels I should have made more of an effort to play with him and may have unknowingly affected his interaction skills. Today, he has been bringing me toys to play with which has cheered me up no end :D

The other thing my husband mentioned the other day is whether we have wrapped him up in cotton wool so to speak. We have been very protective (me in particular). He was late eating lumps (13 months) and that again I think was down to me having a fear of him choking. Oh dear!
All the best
Kirsty

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Hi Runnika. this stage the 'I think there is something quirky but I don't really know' is almost the worst bit and you are really right about enjoying your little fellow as much as possible and I wish I had more. My chap has HFA and never pointed (but I didn't realise he didn't point because he was my first). he did chat and have sentences but there was some echolia and repeated phrases. Re the paying for it route. We have just had to pay for a lot of private assessments due to to taking our LEA to tribunal. There are two excellent SALTS I know of nearish you (Horsham did you say?), one in Horley and one in South Croydon. The latter charges £75 per hour and the report was fab. I would personally wait for the paed appt if it is only going to be a couple of months. Likewise it might be worth saving your money and waiting for the NHS SALT as these assessments are lengthy especially if your son has a major wobbly during it which my son did aged 3 and landed up lying by the door shouting 'I want to go home' - It was completely devastating but at least I wasn't paying for it! Good Luck. Your little boy sounds lovely.