to think my niece is more than just sensitive?

[mendimoo]

My brother, his wife and their 5 year old DD have been staying nearby and visiting for the past week. DN is home educated by SIL and I haven't seen her since she was three until this week because they've been living abroad. Both DB and SIL describe DN as 'sensitive' and they seem to go to great lengths to avoid upsetting her. For example - she can never be asked to do anything immediately, under any circumstances, or she refuses, screams, shouts and cries. She always has to be given notice and told of at least two things that are going to happen first. I.e. I'm going to brush my hair and go to the toilet, then we need to put your shoes on.

If she can't find something, she'll say she can't find it, ask where it is but if someone tells her she absolutely dissolves into hysteria. SIL has to say 'perhaps it could be on the bed/in your bag/in your drawer' even if she can clearly see exactly where it is.

Today we were in a lift and she was running her finger up and down the line of the doors in the middle. A lady told her to mind her fingers when the doors open and DN was whimpering, on the brink of tears, looking absolutely furious and refused to speak to anyone for over half hour. Similarly, the other day she tripped but I caught her before she fell and she behaved as though I'd shoved her in front of a passing car. Earlier in the week when she did actually fall over and had a tiny graze, she was completely hysterical for over an hour and a half.

If people don't talk to her in the 'right' way she completely shuts down and DB and SIL spend a great deal of time and energy trying to coax her back to equilibrium. I have my own children and have worked with children my whole career and I appreciate some are more sensitive than others but this seems extreme to me. I worry that SIL is stuck homeschooling because she knows DN wouldn't cope at school and I want to support her but when I broached it I was told she's 'just sensitive' and will grow out of it.

The little girl from the OP sounds very similar to my Dd3, she does have autism (possibly PDA) and school was a complete nightmare for her and made her depressed and sad and she lost her zest for life!

I think the little girl in the OP is lucky to have parents who are so tuned in to her and who can see that school would potentially be a harmful environment for her!

Home ed is brilliant for some children, my Dd included! Oh and just for the record home ed kids are not lacking in social opportunities, that is a myth!

Thank you all so much for your replies

When DN was 3 she was very difficult. She didn't talk until 2.5 and would ask to be picked up as she hated walking but then wriggle to make her impossible to carry. She'd passively sit in her pushchair regularly. She despised the wind and would refuse to leave the house if it was windy. She became Distraught if leaves or crisp packets blew along, or a bike or dog came towards her. She wouldn't walk on grass under any circumstances and wouldn't even walk near sand without becoming hysterical.

Today we went to a farm and she must've washed her hands with the sanitiser provided 20+ times. She was jumpy around all the animals and was only happy in the indoor play area where she organised all the farm animals into sets and size. She went into the soft play area but another child climbed on the slide as DN was about to go down and DN became so upset that we had to leave.

She still won't sit on grass and only eats cold food which she won't touch. She won't use public toilets and gets changed 10+ times per day, then will want to wear an outfit she's found comfortable for days and becomes Distraught if it gets dirty.

Oh and home education wasn't decided before birth. SIL was career driven before having DN and I feel like she feels that she can't leave DN at school rather than won't.

As far as school being a poor option - not necessarily, depending on where the family lives.

Clearly this child has no diagnosis (or the OP wouldn't be canvassing opinions about her) and that is a problem. It's a problem because without a diagnosis no plan can put in place to work on issues that are amenable to tackling.

Or perhaps there is a diagnosis and one or both parents think(s) they have some sort of inside track when it comes to insight about their child so they have decided to go it alone. They may also be in denial and so have not shared any diagnosis with the OP. I suspect if they refer to the 'intricacies' of dealing with their child they have not sought outside help but are instead seeking to 'manage' their daily life. They may well be meeting her needs and providing the best environment they think they can, but I wonder if their decision to home ed is because school provision for SN is crap or because they are having a problem accepting that there is an issue and are therefore avoiding school. Some people have a horror of labels..

You could broach the matter indirectly by asking them what sort of home ed group they have found for themselves and what sort of adult support and companionship they have as home ed parents.

It certainly sounds as though your niece is more than just 'sensitive'.
I'd be surprised if no friends or family members have suggested autism to your Sil.
It's very difficult if your suggestions are shut down and you're told she will 'grow out of it'. Perhaps it would be better to broach the subject with your brother?
Of course, a diagnosis won't cure your niece, but it may open up opportunities for outside support. Your poor sil must be drained by her dd, surely she would like to find an explanation for her child's behaviour and get some help with managing it?

There's a book called The Explosive Child often recommended on here, which I found helpful in dealing with ds - its key message is that "children behave well if they can" and may need help to cope.

'All of us are on the spectrum' no we fucking aren't. You're either neuro-typical or neuro-diverse. Will there ever come a day where people stop minimalising the difficulties people with ASD have to live with?

The child is having melt downs because she cannot cope with everyday situations. Not because she is 'spoiled'. It sounds as if her parents have had to adapt their approach with her so that they can cope as a family and not that they have over indulged her.

Well this has been an interesting read.

OP, how do you think your SIL would react to a well phrased question along the lines of "Yes, you are right, DN is very sensitive isn't she? Have you ever thought of getting an assessment done to see if there is any help available to make life easier for her and for you?" Something like that? Am sure PPs with DC on the spectrum can think of a better way of phrasing it than me...

Regardless of whether she is autistic/other needs, or if she is the most spoiled little cow to ever walk the earth, you need to develop a strategy for yourself to cope if/when you see them again. It must be quite stressful spending time with them the way you describe it.

I would hope that if she did get a diagnosis ( and she may be too young?) that help would be forthcoming to her parents on strategies that the whole family could use to make life calmer for DN and for everyone?

Eeeps. We are absolutely not all on the spectrum.

The strategies the parents are using are the ones that you are advised to use for children with asd or related conditions. As she gets older it is better if possible that she is able to self regulate but what the parents are doing is 'normal' for a child of that age with asd.

I've been told by a specialist in special needs that we are all on the spectrum.

Is that not correct then? It came from a very credible source.

I also work in special needs and thought this was correct.

Only people who have ASD are on the autistic spectrum.

I have heard autism advisory teachers use the phrase, 'We are all on the spectrum," so I don't doubt that you've heard it. It's a common misconception that minimises the impact autism has on life. My DS2 is autistic, DS3 is definitely quirky, has some traits but would never be Dxed with ASD.

If we are all on the spectrum the whole human race has an ASD.

So why is there criteria and assessments available through ICD and DSM to assess against?

It drives me nuts when it's said we are all in the spectrum. If we are why is my life relatively easy and things I find simple - like crowds - something my Ds can only just about cope with in small doses and needs time to recover from?

It is so rude and dismissive to suggest that everyone is on the spectrum. If that were the case, why would there even need to be a diagnosis?
People wouldn't suggest such a thing for ANY other disability!
But it doesn't surprise me to hear it came from a so-called credible source. There are many so-called experts SENCOS who haven't go the first clue

My ds12 was like that when he was younger and I chose to home school him in 2012 and have since had a diagnosis of asd. Your dn sounds just the same, even now I have to tel ds what we are doing and if I deviate from it all he'll breaks loose. I always said he was sensitive and now I know the reason. Your sil needs telling that her dd may be sensitive but is ott and could have asd. It may not please her very much but the sooner the better.

Yes Ds senco at old school regularly claimed to be an expert in ASD! Her expertise allowed her to suggest him self harming due to school anxiety was perfectly normal because he's autistic.

But then I guess it's perfectly normal and everyone self harms after a hard day - all being on the spectrum and all

Sorry I haven't RTT but sounds like my daughter who has autism with PDA but in mainstream ed.

My nephew's are home ed & I couldn't understand why until I saw for myself that they have uncontrollable ticks & ASD traits.

Now I believe that whatever works for them is all good & that they are blessed with my SIL who is capable & able to provide them with this positive educational experience.
Because I wouldn't be able to cope.

Your DN sounds like her parents understand her SN. Hope things work out well for her

It's always tricky identifying problems and bringing it up to the parents especially when you're related. Could you perhaps talk to your brother one to one to get his honest opinion about whether he has any real concerns about his DD's behaviour being more than just oversensitivity? Then from there you could sensitively suggest that they get their DD referred to a paediatrician or child development center for advise on how to help her. I work with children with various developmental problems and it sounds very much like your niece has some sensory processing difficulties. This sensory processing difficulties are commonly found in children on the ASD but in some cases are not related to autism. A children's Occupational Therapist with sensory integration training can help assess, diagnose and give specific practical strategies that can help your niece be calmer, less stressed and bring out the best in her. It sounds like your brother and SIL have found strategies that work within your niece's difficulties but they are not able to address the root of the problems. There's a good book that the OTs I work with recommend to parents to read- The Out of Sync Child by Carol Kranowitz. I have seen so many parents read it and go "oh my God, now I understand how my child experiences the world and why my child behaves/reacts the way they do!" I wonder if there's a way this book could be recommended to your brother and/or his wife? Good luck! I hope they will be open to suggestions for further investigations/assessments from health professionals either now or in the near future.

There was a family party today for my other nieces birthday. DN5 didn't speak to anyone all day, she had her own packed lunch instead of party food and sat with her hands over her ears during happy birthday. She was excited about her party bag and asked SIL if she could see it. My sister overheard and bought it in to her and DNs face totally dropped and she stated straight through my sister and wouldn't take it. She held it out and asked if she'd like it because if not she'd have to put it back so the babies didn't empty it. DN huddled up in a ball in the corner and shrieked if anyone spoke to her

I spoke to my brother about it all tonight. He said SIL has mentioned autism before but he thinks DN will grow out of all her quirks as she gets older

Oh dear.