Newbie and just starting out assessment for my 6 year old

Hi,

I suspect my post will be like most newbie's posts but I would like opinions or advice please.

My daughter is 6. She met all her milestones that I can remember, it was when she started pre-school that things started to become a concern. She was very clumsy and the pre-school voiced their concerns and we had her evaluated by a specialist GP and the NHS physio. She was diagnosed with lax joints, no big deal, I have the same.

She also began having major meltdowns. Her reaction is just so over the top and disproportionate, it's often over something trivial and they can last between 5-30 minutes. Nothing we do or say makes any difference. It doesn't matter where she is either, at family, at the park or at the bowling alley, if something sets her off, she's oblivious to how she is appearing to others or to our upset or displeasure and continues. Even removing her from the scene or remedying whatever it was that started the tantrum, makes no difference. It's like she can't control herself once she is in that mode.

She will stamp her feet, cry, shout, throw herself around on the floor etc.

We also began to notice that she was having trouble interacting with others. She had trouble making friends, she would approach them too close or talk to them about inane subjects and you could see they were uncomfortable or uninterested but she couldn't. At parties, everyone else had a friend/group of friends but she is often alone or tries to join in and is still left out.

She complains the children in her class are rude or shout at her when she offers to help for example. I have known these children professionally since pre-school and am not so sure, I wonder if she can't read them so assumes they act that way but perhaps it's actually a reaction to how she interacts with them in the first place?

Lots of others things concern us as her parents - she has limited interests such as drawing or writing, taking lots of care over both. She will listen to the same songs again and again or watch the same film 3 or 4 times in the same day. She will talk intently about certain things, things that don't even matter really and is insistent that we acknowledge her and listen to her fully. She is still not night dry, she has inappropriate reactions if her siblings so much as breathe in her direction. It's like she doesn't know how to react or act in life to things.

This past week, she has started to do this deep breathing/sighing thing. I'm pretty sure it's not a physical issue but will take her to the doctors to be sure of that of course.

She also has issues with loud noises, for instance a dryer in a bathroom. She will clamp her hands over her ears, shake or cry - it can instantly stop her finishing toileting and she will refuse to continue even when reassured. She also has quirls about things like toilets, she won't use ones if she chooses not to - no rhyme or reason for which she will or won't, she just sees them and point blank refuses and physically stops us moving her. She has very picky eating habits, eating a very limited range of foods and always with ketchup. If you cut her sandwich wrong, major meltdown and she will point blank refuse to eat it even if you remedy it.

I'm very friendly with her school, and as a qualified TA myself, I like to think I'm tuned to detecting issuses but either way, my mummy instinct has always told me that something is amiss with her and others - family members have agreed. I've raised the concerns with her school who have said that she is academically doing very well and have engaged her in lunchtime groups thinking she's just shy or socially awkward but to no avail. She also seems to daydream at school, her last school report. I finally have a meeting with the school Family Link TA who has mentioned doing a CAF with us - I think it's a good idea myself.

Can you advise me what I should hope for/expect from this form and where I can go next? GP?

Thank you for reading, I would appreciate your thoughts too!

  • bakeybadoo, I had to reply because your 6yo sounds almost exactly like my 7yo dd! The only thing that she doesn't do is the thing with choosing toilets! (although the hand-dryer thing, she does do that too).

    My dd doesn't have limited interests but has a long history of strange and limited repertoire of play, the language of which can be un-intelligable.

    My dd was under the community paed aged 4 referred on recommendation of SALT following severe receptive and expressive language delay. The first referral led to discharge with no formal ASD assessment based on the excellent progress in language and doing well at school.

    She was re-referred to community paed at my request following continued excessive emotional outbursts at home and an unsuccessful year in school with attention/focussing problems. And issues with things like being asked by her piano teacher to discontinue lessons. She will have her formal assessment for ASD in July 2013.

    My dd's language is now normal/above average (hooray!) except in social communication and conversation skill which are completely out of step with the rest of her language skills, on the 1st centile. Her interactions with friends can be 'off key' and the work I do with her at home re being a graceful host at playdates completely backfires when she visits friends and announces that she expects to be waited on hand and foot! My dd is outraged if you have not read her mind about her choice for dinner, if you take a chip from her plate, a sip from her drink or not cover the weetabix with milk so that it submerges the top of it!

    When community paed was mentioning it may be ASD I completely denied the possibility (I was thinking ADHD) because I am so completely used to how she is, totally accustomed to it. I can see now, especially since recent SALT report (normal language & 1st centile for social communication) that a lot of her behaviours can been seen through a prism of ASD, things I had not seen that way before. I think if my dd is diagnosed it will be a starting point for understanding and helping my dd with her social skills. As my SALT informed me, they are not a huge problem now, but will become a bigger issue as she gets older.

    You sound very empathic and a lovely Mum. You are tuning in to you dd as much as you can, and this of course helps her immensely. Yet your Mummy Instinct is telling you to delve deeper. Your ability to empathise with and accommodate your dd means you need some clarity on the issue and objective assessment. We will have ours in July next year, but it will come!

    Just a word about the CAF doc though, I wonder if one is necessary? My daughter was referred through school nurse using only a single service request. CAF seems a very long winded way of getting a referral - could be as simple as a visit to the GP?

    Good luck and keep me posted about your dd. Message me if you would like.

    Handywoman x

  • hi - they didn't have CAF's when my son was diagnosed so, sorry, I don't know what one is!  However, if when completed it recommends further investigation, then obviously that needs to be done so your child can he helped.  Scorpion's comments are spot on.  It takes time to get tuned in to autism + how it affects your child as an individual.  You have to learn to do that so you can help.  It's a learning process.  For example, say your child is sensitive to certain noises + you aleady know that.  You may go somewhere + think to yourself it's rather noisy here + leave it at that.  If your child is with you, then that situation becomes important because they are experiencing something much bigger than what you're experiencing.  Maybe to the point where it's painful.   So then you have to think what you can do to help your child in that particular situation, inc. whether you shd leave.   Then you have to think what you can do if your child has in the future to experience that situation again.  That's just an example.  When your child has a meltdown it's because of an overload.  What causes that overload?  How can it be lessened or avoided?    Please investigate the nas site if you haven't already done so - there is much info which is v useful.  You sound like a good mum but as you say it's a big learning curve if your child turns out to have asd, which is yet to be proven.  You are + will continue to be an important person to your child - a fixture when others come + go.  Good luck with the CAF.  When my child was young we saw a Paediatrician regularly as well as other professionals who were part of the assessment process.  bw

  • Thank you for your response, Scorpion - much appreciated.

    I probably didn't word it right, or perhaps I did but meant how it appears to outsiders/us at times. Just because we don't see the reason or a pattern, I'm sure it's logical to her. In some cases, maybe not which makes her so frustrated at the world.

    I try and put myself in her place so I can be more understanding, especially during meltdowns but it's hard if you've not walked in those shoes I guess.

    Even if it's not autism at all, I'd like to at least figure out what is possibly going on so we can work on making things easier/better for her and for the family as a whole - it's a scary unknown path we're treading here.

  • Hi bakeybadoo,

    I can't advise you on where to go next, or what to expect, but I hope you don't mind if I pick up on a couple points you made:

    "Her reaction is just so over the top and disproportionate", "she doesn't know how to react or act in life to things", and "she won't use ones if she chooses not to - no rhyme or reason for which she will or won't"

    Assuming she is on the Autistic Spectrum, there is rhyme and reason to what she does, and, if you could perceive the world in the way she does you would see that her actions and reactions are entirely appropriate to the world in which she lives her life, and not over the top for the assault she is experiencing.

    You see, even with very 'mild' forms of autism, we on the spectrum often perceive a very different world, both sensory and social, to the one that neurotypicals perceive.

    She may, for example, be able to perceive smells that you can not - hence her dislike of certain toilets.

    And we often have a very well defined and absolute sense of personal space - even to the extent of having a kind of sixth sense - I for example know when there is someone standing behind me, even if I have not seen or heard them, because I can physically sense there presence.