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My niece diagnosed with autism-what to do?

14 replies

iloveACK · 12/04/2012 11:41

My 3 year old niece has recently been diagnosed as having autism which they have said they believe to be quite severe.

We don't see my DB or his family v often as they live quite far away, but we are a close family.

My question really is what should I as an auntie be doing to help/support, given im not close by? We will be seeing them in a few weeks, is there anything specifically I should do or not do with my DN? Previously when she has blanked me, I've let it go - is this the right thing to do or should I work harder to engage her? She enjoys playing with her cousins (I have 3 boys aged 5 & under) and that's great so in the past I've let them get on with it. Should I be doing more?
My brother seems to be coping ok, but my DSil (who is lovely) is understandably v stressed by it all & I'm afraid of saying or doing the wrong thing, so any advice on how to proceed & what to do/say/not say etc would be greatly appreciated.

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StarlightMcEggsie · 12/04/2012 12:07

You sound from your concern like you would get it right anyway.

I think the key thing to look out for is to not fall into the trap of offering sops.

No 'oh she'll get there' 'Einstein had autism' 'she'll probably develop a special talent' etc.

If she's ready and you can afford it take her the Hanen 'More than words' book which is full of useful things you can do with a young child with autism.

Find out if portage operates in her area or homestart and check she has applied for DLA.

iloveACK · 12/04/2012 12:13

Thanks for replying Starlight. I know they have had some advice re DLA as someone was round last week to talk them through lots of practical things re support groups & next steps & that was also mentioned.

I'll look into the other things you mentioned as this is all completely new to me & have no idea about any of it.

Do you have any thoughts on whether I should try to engage with her more? Or leave her to it when she blanks me?

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cansu · 12/04/2012 13:35

I really wouldn't force the issue with your niece because it will seem unnatural and may upset further your sil. Obviously talk to her, play with her if you can but don't make a massive fuss of it. I would also be guided by your sil. She may not be ready to talk about this yet. I remember my sil talking about my dc autism at a big family dinner as if it was an interesting subject and I had to leave the room as I was so upset. To her it was a fascinating subject whilst to me it was devastating news.

NKffffffffa5e131efX119f156648a · 12/04/2012 13:50

Hi, I'd really welcome some advice. My 22 month old son is very shy and won't even look at people he doesn't know (gets very anxious if strangers try to engage with him) and he's not interested in other children and sometimes appears not to be aware of them. In all other respects he seems to be doing ok - speech on track and uses 2 and 3 word sentences, does imaginative play (although can also play repetitively), likes running around with his brother and no issues around eating or routine. He was born with delayed visual maturation (couldn't see for first few months and then sight developed slowly) and we are aware that there is a greater chance of autism. We are really worried about our son and would very much welcome advice on how we might help him. Are his symptoms typical of autism? Thanks very much.

iloveACK · 12/04/2012 15:34

Thanks for the advice Cansu - I'm afraid of doing the wrong thing by accident really. Before the diagnosis, I wouldn't have forced things at all, so will follow that given what you've said. I'll take my cues as you suggest & follow their lead re talking about it - I'm just concerned they'll think I'm not interested if I don't mention it but hopefully they wouldn't think this as they know me!! It is great to see her play with my boys, especially my 5 year old as she does interact brilliantly with him.

NK, sorry, I have no advice as I'm completely new to this & only see my niece infrequently to even comment on her symptoms. However, at 3 she doesn't speak but makes noises which sound a bit strange & she doesn't make eye contact with strangers at all (although she does with my DB & SIL & also my sons). Given that, we thought she may be mildly autistic, but the diagnosis has come back saying she is severely autistic & will need to be assessed as mainstream education will likely not be possible - so a shock for all of us & right now devastating for my brother & SIL.

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StarlightMcEggsie · 12/04/2012 15:52

Well you know this isn't a sop, but it is pretty hard to tell at 3 whether a child is severely autistic or mildly. I mean I'm sure the diagnosis is accurate but the capacity to change is huge (in both directions).

Where you are on the spectrum at diagnosis is no indication of prognosis, so whilst things might look bleak or scary, that is no reason to give up hope.

Additionally, a prognosis of severe autism whilst devestating to imagine does not always remain devestating iyswim.

The above is for you really. Probably not best to share this yet. I went to an autism support group immediately after ds' diagnosis and with a miserable face said to the leader that we had just had a diagnosis. She snapped back 'that's really no the worst thing you know!' which I absolutely agree with now, but at the time it really really was.

BagPuss71 · 12/04/2012 16:18

My DS is 7 and has ASD. He was diagnosed at 5 although I suspected it from around 18 months. When he was about 3 he had many autistic traits and I was in total despair and at my wits end, my main concern - what do I do?

On the bumpy path to his dx the advice I was constantly given was 'early intervention in key'. School were very good and supportive and now, aged 7, he is making good progress, never stops talking, has a couple of friends and the ASD, whilst still there, is not as obvious. I cannot recognise the toddler that he was (hat rammed on his head whatever the weather, spinning, tantrums, non verbal, blanking me etc). At the time of his actual dx, I was so upset - I couldn't bury my head in the sand any longer!

My ds is 'high functioning' but I didn't really know what end of the spectrum he was at when he was younger. The important thing to remember is that getting a dx is a blow, however severe, but its really not the end of the world, the great strides can be made with the right support.

iloveACK · 12/04/2012 22:06

Thanks Starlight & Bagpuss, that's really helpful & how I feel now actually. I'm upset with the diagnosis obviously, but glad that it's been diagnosed & people are working to help her as for ages I've thought something wasn't right but kept being told that she was fine.

She is a happy little girl & so full of potential that I just want to help where I can ensure she reaches it.

It really is great to hear your positive stories & hopefully that will be how things work out for us too. Thanks again for taking the time to reply.

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Spiraling · 13/04/2012 12:12

you might want to look at phoebe caldwell

intensive interaction

Sorry probably a bit to much info a summay of intensive interaction below, but essentially the idea is when you spend time with you niece, let her take the lead and then you copy her - For example, in answer to a sound, ?er-er? I might make the same sound, ?er-er? (imitation). Or I might make the same sound but elongate it, ?eerrr?, or shift the pitch up or down, or lift it at the end (a good way of asking a question). I might alter the rhythm. Or I might shift the mode, answering the sound with a tap, or draw the shape of the sound on their arm. All of which gives the brain something it recognises but also, a slight ?jolt? ? ?that?s something I recognise but it?s slightly different?.

My sisters have been great, the fact they aspect ds (HFA), they do not do anything special, but accept him and allow him to be who he is. Like bagpuss we did not know where ds was, but between ages 4-5 he came on loads. But we had early intervention (www.portage.org.uk/) which really made the difference.

Intensive Interaction is an approach for teaching communication skills to children and adults who have autism, severe learning difficulties and profound and multiple learning difficulties who are still at early stages of development. The approach focuses on teaching the Fundamentals of Communication ? the communication concepts and performances that precede speech development, though it may include many people who have some speech and language development.

Intensive Interaction was developed during the 1980s by teachers working in schools in long-stay hospitals in southern England. The development of the approach came about partly as a result of practitioners questing for effective teaching approaches and partly as a reaction to and move away from the dominance of behavioural psychology in the field.

The techniques of teaching borrow from understandings as to how infants in the first two years carry out the learning of these highly complicated, critical concepts and abilities. The mass of research on babies learning in interactions with adults that has arisen since the mid 1970s, allows some simple pedagogical insights. Babies gradually accrue these complex performances by taking part in many successive, cumulative interactions with the adults around them. The main learning motivation for both participants is the mutual enjoyment of the interaction. The natural adult style is to construct the interaction basically, mostly, by allowing the baby to lead with her behaviour, with the adult building the content and a flow by responding to the behaviour of the baby. It is usually observed that the most frequently seen adult response is to imitate what the baby does. Thus the teaching is highly responsive and by process, rather than directive and driving to an objective.

For the developers of Intensive Interaction, it seemed a logical step to borrow from these processes in order to ignite the communication learning of many people who can frequently be considered ?communicatively difficult to reach?, often living with some, or extensive, social isolation. Thus, Intensive Interaction activities are literally highly interactive, with the teacher enjoyably working from the behaviour of the learner. The activities can operate at many levels of intensity; they can be active and physical, but also quietly intense and contemplative. For good progress to occur, the activities should happen frequently (daily, day after day), with the repetition of successful activities within sessions providing the basis for the gradual expanding in duration, content, sophistication and complexity of those activities.

Who is Intensive Interaction for?

It is intended that Intensive Interaction will address the needs of:

People who are pre-verbal, with few or limited communicative behaviours.
People who are extremely socially withdrawn, and do not positively interact with other people.
People who display various stereotyped or self-stimulatory behaviours that exclude the participation of other people.[1]

JustHecate · 13/04/2012 12:22

I'm not an expert, but my two both have autism. I have no idea what you're supposed to do,or any programmes to follow or anything like that. all I can say is how I like people to treat my children.

Normally.

Talk to them, play with them, be proud of them.

But understand and accept that they won't always talk back to you (for years they couldn't!), or want to play with you. Don't worry about the odd noises they make Grin. Be loving and tactile - if they can cope with that, but don't push if they don't want to have a hug or anything like that.

Read up about autism. Understand what it is - a bloody MASSIVE spectrum, for a start!

And for the love of god, do NOT talk about Rainman. Ever.

iloveACK · 13/04/2012 12:24

Thanks for that Spiraling - makes sense how it is explained there so will try it.

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zzzzz · 13/04/2012 12:32

This reply has been deleted

Message withdrawn at poster's request.

ApplePippa · 13/04/2012 14:08

Everything JustHecate said!

Like your niece, my DS is 3 and was diagnosed a just a few weeks ago with autism. He is still the same little boy he was before diagnosis, and is still my sweet, wonderful pfb and the centre of my universe. I am finding it easiest when people just let him be himself and don't treat him as "special".

I am no expert on autism (only my son!), so not really qualified to give any advice on how to engage with your niece. All I can say is that my sister (who like you doesn't see him very often) has been just brilliant. She knows he loves tickling and chasing games, and while he was running around, just began a very gentle game of chasing him. It ended in a full-on romp involving his cousins as well, and lots of laughter and merriment from all involved! It was lovely to watch :)

Not sure if this helps at all, but you sound a lovely caring auntie, and that will mean a lot to your sil.

iloveACK · 14/04/2012 13:32

Just seen these last few messages so thanks (missed yours yesterday Justhecate).

I really appreciate the advice.

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