Here some suggested organisations that offer expert advice on SN.
For those with DC who only MAY be on the Spectrum...a little story of happy.(19 Posts)
ps I wouldn't have objected at all to a diagnosis of dyspraxia, tbh, which is actually considered by many these days to be on the autistic spectrum, but which obviously focuses on the co-ordination side of things, rather than turning everything into a social issue... I wasn't going to push it, though, as years of trying to get appropriate help get quite wearing and the occupational therapist never took the remotest bit of interest in ds, since he didn't have trouble with handwriting, memory or attention... despite the fact he couldn't work out for himself how to crawl, get to standing, walk, open presents, dress himself, etc, etc.....
Withdrawal of the aspergers diagnosis was a relief because it just didn't fit him - he was like a boy who strongly demonstrated a lot of features commonly associated with aspergers but which were not necessary for a diagnosis, and with the central part of the diagnosis being by far the weakest point in the chain of symptoms. Only having a diagnosis of ehlers-danlos syndrome for the hypermobility isn't right, either, though, imo.
Verbal IQ covers verbal reasoning, vocabulary, information and comprehension; performance IQ covers perceptual reasoning (eg spatial perception, non-verbal problem solving etc); working memory covers digit span, mental arithmetic, letter-number sequencing; and processing speed relates to visual analysis/scanning speed, visual-motor co-ordination etc. My ds did phenomenally well in all aspects of the verbal IQ and working memory, but his low muscle tone and poor visual-motor integration had an inevitable impact on his performance IQ tests. I was surprised that his processing speeds were so good as I thought they would be impacted more by his physical co-ordination. However, his processing speed was partly tested by some kind of symbol hunting test, and he has no trouble with abstract symbols! He's a bit funny generally in the perceptual reasoning/processing area, though - never had trouble understanding left from right, reversing letters or learning to write legibly, but has always had difficulty with 3D spatial relationships, drawing, seeing the big picture in all the detail, working out how to do anything physical without being taught, which showed up very clearly in the block design test. But then since he sat on his bottom/lay on his back (he couldn't even roll over) until he was well over a year and a half old and didn't walk until he was nearly 2, I don't find it hugely surprising he isn't the greatest at understanding how some things fit together and how he fits in with his environment! He even needed to be taught how to unwrap presents... Poor proprioception is very common in hypermobile children and if you have fairly poor awareness of where you are in space, then apparently that does have an impact on your ability to work out how everything else fits in around you... it is only as he has started catching up on the physical and perceptual side of things that his anxiety has gone down and his behaviour gone from appearing quite autistic to appearing fairly normal.
rabbit...how did you feel about your ds dx being withdrawn if you dont mind me asking...was.it a relief or a worry?
rabbit thank you for sharing. I was wondering if anyone else had had a similar experience to DD!
Interesting that our DC are similar re the verbal skills...DD is also not great physically and is stiff....tight muscles somehow. She finds it hard to touch her toes.
DD wouldn't ask for a crayon in preschool...I remember the teacher telling me that....she'd sit and colour with one black crayon rather than speak up.
Can you tell me what verbal and performance iq means please?
Not that dissimilar to my ds1, who has blossomed in year 4. He has actually just had a diagnosis of aspergers withdrawn. No change whatsoever in his diet... He does have a very spiky IQ profile, though - an exceptional verbal IQ (was also a very early reader), fantastic memory (very useful for helping him develop skills that do not come naturally), reasonable processing speeds, but a colossal discrepancy between verbal and performance IQ. He also has low muscle tone and hypermobility. His imagination is very vivid, his sense of humour sophisticated, he adores reading and living in a fantasy world, likes to go to new places and try new things, is liked at school, will contribute happily in class, is doing extremely well academically, and has a nice group of friends. He is not at all like the twitchy, wooden, hypersensitive boy who wouldn't even ask to go to the toilet a few years ago, let alone look anyone in the eye. His IQ profile and hypermobility indicate why he still has some issues, however. He will always, I think, struggle a bit with physical things and spatial skills, which he sometimes finds hard to deal with, particularly since ds2 is unusually good at all the things he finds difficult, just to rub salt into the wounds. You could say, his brain is not likely to be wired in a standard way, but over time his brain has developed enough connections in the right places to be able to fit in with a standard world!
Ah thanks Lemon. don'tknowwhattosay...I see...the thing with DD was that she was very articulate but not in all areas. So as I siad, she'd get very frustrated if I asked her to describe something....and writing a story was not an option for her.
She just wouldn't use words creatively. I hope that people might gain something from my describing the change in DD. It's really bizzarre and I can't quite explain it.
It's all types of expression including thoughts and feeling everything -"receptive" language is the understanding of language ie understanding what others say to you eg being able to follow instructions etc..
As in "I'm hungry" or "I'm sad." ? Or more complicated thoughts?
"expressive language" is using words and sentences to express yourself.
Thanks don't...I had no idea that their brains can still mature until 8....is "expressive language" what you'd use to describe feelings etc?
It's odd because DD was VERY articulate...but looking back, her speech was almost TOO good in a sense. Learned maybe? Incredibly fluent but only at home.
Neo - that really is a remarkable change - my dd also has a good sense of humour but her expressive language is behind she is certainly not as fluent as her peers. I have heard that the brain can still be maturing until age 7-8 (which is why some Paeds do not like diagnosing earlier than this age in cases which may be borderline) so maybe that is what has happened in your daughters case.
To add...she had what appeared to be deficits in social skills...her understanding of conversation was quite literal...she also struggled with reading comprehension (which I put down to her inability to share or even talk about anything to do with emotions....so when she was asked to talk about feelings in relation to a book she was reading at school, she'd clam up and they took this to mean she was not comprehending.
She was also showing some signs of stimming...vocally and would destroy her nails and pick lumps out of her ears...scabby ears all the time and of course the sensory thing with regards to sound.
I didn't cut out wheat dontknow....but we now make all our own bread. So it includes flour..white, wholemeal or seeded sometimes...yeast, water and salt...sometimes sugar but we try to use it in moderation always.
We basically don't buy anything that's been altered in some way and we've moved away from meat to a large extent though not quite vegetarian, DD probably has meat in the form of chicken once a week.
It's bizarre to be honest. She used to be like a frozen statue in school...her face would be "set" and expressionless...especially if she was "on show".
She also used to say inappropriate things...like in parents evening first year in her new school, she came with me and in the middle of my discussion with her teacher, she pointed to a flaw on my face in the middle of it all and said "Why have you tried to cover that up?" basically she was "odd" and it seemed to be getting worse at that point so where we are now is REALLY odd in a way!
Hi Neo - thanks for sharing your story. My dd is 6.9 and diagnosed ASD - the playtime scenario is familiar DD complains of the noise in the playground and prefers to sit outside near the classroom door rather than run around and mix with the other children.
Also my DD loves reading and I love listening to her read as she reads with such good expression. Anyway, I am digressing now but
I am interested when you say you cut out processed foods - did that include wheat?
JUST what I needed to hear today.
I should add...she is no longer noise sensitive either...her sense of humour has always been sophisticated but now it's even more developed...she seems changed but I don;t know how it's happened or why? Processed foods? I don't know.
DD is in year 4 at a nice state primary. She's 8 so one of the youngest. Prior to this school which she joined at the start of year 3, she went to a tiny independant prep because she was...quirky and I wasn't sure if she was going to get dxd with a spectrum disorder.
She was selectively mute for her first year at the preps nursery and part of reception too....despite having spoken extremely well since 10 months old.
She had sensory issues too...and also palalia...the sound of a handdryer would send her into a panic... She stuck out around NT kids but nowhere near enough to get picked out....I think that had she gone to a state school, she would definitely have been assessed early on.
I felt like she was...not there...she never told me anything about her day at school and never ever wanted to go. She had regular meltdowns at home and some at school in the early days but did make friends.
Anyway...I moved her in year 3...she began at an outstanding village state school and immediately her quirks were even worse.
She wasn't mixing at all and the work was beyond her...her teacher said she was behind despite the prep telling me they had been happy. and she said that unless she imroved and settled then we needed an assessment. I was happy about this but also afraid.
Her reading was the only thing where she was ahead and she was a level 4c at the start of year 3. BUT she spent each playtime alone rubbing her arm along the railings...despite the other DC trying to play with her. She had a few invites to playdates at the start of joining the school but they soon dwindled and I began to think the tiny prep had masked her problems.
I made her join Brownies and removed all processed food from our diets at this point.
Her teacher implemented a social skills thing where she had all the DC playing old fashioned circle games at playtime and MADE DD join in.
She began to come out of her shell a tiny bit.
Now in year 4 she's blossomed almost overnight. Her teacher told me "It's like a light switch has been turned on..."
Her work has soared..her friendships have grown and she has started to get invited to parties.
I don't know what's happened but since September she's begun to tell me ALL kinds about her day...she's affectionate and witty..tells me she loves me (She had NEVER said that to me once before) and she loves school.
I just wanted to share...I had so many worries and she's suddenly fine. I just wanted to share because I know there are others here with kids with quirks who might be cheered.x
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