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Fayonaise

Niece possibly on the spectrum... advice?

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Fayonaise

So, I need some advice.

My niece is six years old and I'm pretty certain she is on the spectrum. She also has difficulty listening to people and staying focused (possibly ADD?).

My sister has taken her to the doctors one before and her case was referred to CAMHS but the case got rejected. She approached her school and is supposed to be receiving emotional literacy support(?) but nothing has really come from that. My sister has gone back to her GP a couple of times and is awaiting a call from them regarding help for her.

I really would like to do something for my niece, as I feel I understand her more than anyone else. My sister often tells me that my niece reminds her of me so much. We share very similar traits. I'm also undergoing assessment regarding Aspergers.

Due to her lack of concentration, it's really hard to talk to her, she also can't write well, so asking her to write down her feelings is out of the question. I managed to get some information from her today at a family party after a meltdown regarding another family member and my nieces small teddy bear - she told me she doesn't like people touching her things (I also get like this) and being with lots of people is sometimes 'scary' and makes her upset - which I interpreted as she gets 'overwhelmed' (totally get like this too).

My sister said she is easily bored but absolutely loves crafts and it's the only thing that keeps her focused. She also doesn't talk sometimes and communicates by pointing and the 'thumbs up/down' hand gesture. She also 'takes' things from school like small plastic gems and the plastic blocks they use for counting which she has got in to trouble for.

I was just wondering if anyone could offer any advice on how I can help her? Is there any other way I can get her to share her feelings?

I just feel so helpless, like there is nothing I can do for her. It's heartbreaking because she is such a polite little girl and is so grateful for everything yet she thinks that no one loves her. It's almost like she feels not good enough.

I can't afford to take her to any classes and neither can her mother, but I just want to do something to help her as I feel I understand her so well, yet I also feel like there is nothing I can do.

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Heather

Aww I don't know how I would help her either if I was in your position.  But she sounds like the sweetest little girl!!  If she loves crafts, maybe supporting her in doing craft things with/along side/at the same time as her might be a nice gesture.  Complimenting her craft projects might make her feel like she's done a good job?  Maybe if you are both at a big family gathering and it is very busy then you could ask if she wants to go into another room for a bit to be able to relax more until she is ready to reenter the main room with all the noise. 

 

I think just trying to be as understanding as you can, and being available to when she wants to talk but not pushing her to talk might be good?  Though it's kind of hard to say because I don't have much experience with these things really.  My cousin's son has a form of autism as well and so it's always interesting to watch him during family events.  I feel like Chloe would have good advice if she sees this since she works with kids with autism as part of her job. :)

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Saveyourscissors

I know exactly how you feel this situation happen to me with my niece! Her parents and her were told she has Autism (not AS/HFA) last Thursday! :) She is 10! It has taken then 6 years to finally have it recognized, She was diagnosed with Glue ear as a child for the reason she wasn't verbal, and she was then diagnosed with Dyspraxia too. Her school refused to help too until the day she left when they said if we filled the forms out now we'd say she had Autism/Aspergers. She started a new school in September and her first parents evening was the other week and the teachers all sat down with my brother and his fiance and said she was the most obvious case of Aspergers or High Functioning Autism they had ever seen!! Finally people are now recognizing it but they have pushed and pushed to get the appointments with specialists with constant rejections and finally they got it and first session they say she has ASD she will be fully diagnosed in February, Just keep pushing and pushing to get where you need too! :) I hope this helps a little x



Also to help her, give her time and undivided focus whenever you can, take her out, find out what she likes/dislikes and help her to learn new thing, let her know you understand and are just like her, give her someone she can trust. 
This is key to my niece, that she has me and 'I understand' I'm 'like her' it helps her a lot!!



It's hard for me to say exactly how you can help without knowing a little more about your niece! I'm happy to help though so feel free to message me on here or on facebook :)

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Fayonaise

Oh thank you so much Chloe! This advice was reassuring.

She made quite an entrance at the gathering, tripping and falling as soon as she came in. Hehe.

Some things I've noticed in her are so typical of Aspergers. My aunt - who is a foster carer and has experience with children on the spectrum has also picked up on her traits.

I've told my sister to keep writing things down to gather as much evidence as possible to present to whomever she sees. She has typical child obsessions such as these 'Monster High' dolls but she also has an unhealthy obsession with death. I don't know how such thing came about and neither does my sister but we have to not mention anything like that around her because she just keeps talking about it and then worries that her parents are going to die and she's going to be left on her own :S

She's also got imaginary friends which she calls her 'guys' - I've not leant much about these because she won't talk about them.

I've actually found a national autistic society in my town which I'm going urge my sister to take her to as you don't need a diagnosis to attend.

I was surprised she actually sat down and spoke with me - she's quite emotional and was welling up as she was telling me which was heartbreaking. But I got a big hug from her. :)

I think my main goal is to get her to try and open up to me or even someone else as much as possible, without pushing her too much.

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Saveyourscissors

Oh thank you so much Chloe! This advice was reassuring.

She made quite an entrance at the gathering, tripping and falling as soon as she came in. Hehe.

she also has an unhealthy obsession with death. I don't know how such thing came about and neither does my sister but we have to not mention anything like that around her because she just keeps talking about it and then worries that her parents are going to die and she's going to be left on her own :S

 

You don't need to thank me! 

Sounds just like my niece she does stuff like that so much bless her. 

This is something I think is quite normal to someone on the spectrum because its something that is a scary thought, and plus there aren't many people they are worried about losing, My niece gets very emotional and worried and fixed on these things too if she hears anything to do with someone she cares about dying. To the point someone like 'Steve Jobs' she was so worried because she didn't know how she would get a new iPod if hers broke and things like that. But her family/parents she gets very panicked by. Has meltdowns and asks questions for days. It will take her a long time to move on from this thought. I find I worry about me or Josh dying all the time. If I think about it I get really worried and I can't get it out of my head for ages.

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Saveyourscissors

I was surprised she actually sat down and spoke with me - she's quite emotional and was welling up as she was telling me which was heartbreaking. But I got a big hug from her. :)

I think my main goal is to get her to try and open up to me or even someone else as much as possible, without pushing her too much.

 

That's really good, because she is confiding in you and trusts you. She probably can sense you are similar to her and may understand more too!

That's a great goal to have Fay, the more time you spend with her the easier that will be, never push her like you said and don't ask to many questions, let her just talk when she wants to. (no doubt when you're least expecting it!)

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the strangest man

If your niece has problems writing try asking her to draw pictures to describe how she's feeling. Or you can get picture cards to help off amazon. Otherwise you can, if you're in the UK call the National Autistic Society's help line, the numbers on their web site.

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Nesf

It sounds like you are already doing a lot to try to help and support her. As Heather said, doing the craft things with her, complimenting her on them and encouraging her will help her to gain self-confidence. Sometimes it's hard at that age to recognise feeling, but if she's good at drawing she could draw a picture to show how she's feeling.

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Whoknows

Tell her that she can get the gems and blocks elsewhere. There is no need to take someone else's blocks.

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Toran

I think your doing the best you can its very difficult to know what to do for the best and a lot of the time you can only react with whats going on at the time.

I cant add any more to whats been said I think your doing all that can be done.

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