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Where to start with referral for DS 6yrs old?(11 Posts)
Hi, I'm regularly reading threads on SN's board and hope that you wonderfully informative people could give me some advice please?
I am wanting to start the referral process for my DS (currently in Y1) who I feel shows signs of ASD/ADHD/SPD/Dyspraxia not sure which mainly or if possibly bits of all 4! The more I read the more I see signs in all areas!!
The problem I have is that I'm currently in the referral process with my DD (y4) who already suffers from anxiety but there is definitely more going on which she masks a lot of the time but school do see her meltdowns when she just can't cope. I initially contacted our GP but was told they don't do the referral it has to be the school nurse. This was fine I met with the school nurse who was lovely and referred DD to CAMHS (as school supported the referral). Then it has been a nightmare of waiting, then initial assessment, then more waiting, when chased we had been lost in their system so had to go back in for initial assessment but are finally on the waiting list for an ASD assessment.
The problem I have with DS is school don't have any problems with him, he is bright and doing well (apart from his writing which is terrible) so I can't see the school nurse supporting a referral? In which case who will??
To give a bit of background to show you my concerns around DS-
He is extremely clumsy, bumps into things, trips over, falls off his chair etc several times a day. He can't yet ride a bike, even with stabilisers as cant seem to coordinate pedalling and steering at the same time.
He cannot keep still he figets, moves, sits down stands up, when walking near roads I hold his hand (as he has no road sense) but he hops, skips, jumps while walking, I don't trust him coming downstairs still and has had a few falls on stairs.
He is very obsessive, he gets into one thing and learns all about it, all facts, names etc he loves character encyclopaedias and reads them over and over until the books literally fall apart!
He sets up 'worlds' with his toys and gets very upset if someone else wants to play with it and mess it up, he also lines a lot of his toys up, even his felt tips he will line up in colour order.
He talks very loud yet is frightened of loud things, Hoover, hand dryers, thunder, fireworks, even people who shout.
He uses his head a lot, out of frustration he will headbut (has never done this at school but does to his brother and sister at home) but he also uses his head as a sign of affection rubbing it on you or pressing his head into you. He also likes to lick you rather than kiss you.
When excited he hand flaps and also when running, if wearing long sleeves (cardigan, coat etc) he pulls his hands inside his sleeves so he has a piece of empty sleeve to flap too.
He is very oblivious to these things and is unaware of his surroundings a lot of the time, you quite often have to say his name right in front of him to get a response (I did have his hearing checked as that was a concern)
There is probably lots more things but most things I just take as being DS's quirks which we are used to!
The only things school have mentioned is how loud he speaks and that he gets very excitable but they don't have any issue with it and put it down to him being 'a boy' and only in y1 so still young. Because he is extremely good at reading (already at free reading level as completed all colour bands) and very good at maths they aren't concerned as say his writing will improve with practice (he hates writing and doesn't hold his pen properly as has bendy joints)
My concern is that if I don't do anything about it soon he is going to move up in school where they will expect him to sit still and work quietly but he just can't! So where do I start?
Sorry it ended up very long and thank you for reading, any advice would be very much appreciated.
Some other things i have just thought of!!
Stutters at the start of speaking sometimes or repeats the first few words over (then sometimes forgets what the rest of the sentence was going to be) and refers to himself in the 3rd person quite often ('xxx would like a drink' not 'I would like I drink')
Doesn't like his food mixed, won't eat spag bol, shepherds pie etc as mixed together and likes dry food no ketchup, gravy, mayo. Would live on nuggets or fish fingers and chips. Also likes food cut a certain way eg. Carrot sticks if raw carrot but in circles if cooked carrot, wouldn't eat cooked carrots in sticks as that's not how they should be!
Sorry for addition, I should have done my list before I decided to post on here. Thanks
I would definitely pursue assessment. It's not uncommon for schools not to see what we parents see. Maybe put together a list, use headings like communication, behaviour, play, concentration, motor skills, social skills and sensory type thing, I'm sure you've read stuff around the various neuro/developmental conditions, so use that as a guide to highlight the anomalies. Do keep a diary to help you spot patterns and help you remember things.
And have a look at the Sensory Processing Disorder support thread on this board, I think you'll find it helpful
I agree persue assessment. I'm a great believer in mothers instinct.
I am also very glad to have found someone else with the raw/ cooked carrot thing!
In year 1 DS also presented like this - loud, writing a struggle, bouncy etc. he also sets up scenes with Lego etc which can't be moved. In fact I've written that numerous times on forms I've just completed for Camhs and thought it sounded nuts until I read your OP
He has Ados next week and I really wish I'd done it earlier.
Is also mention that your DD is being assessed as it's not u common for members of the same family to have an asd.
Thank you for your replies, it's nice just to have someone agreeing that there are issues there that need to be addressed!
PolterGoose thank you for your suggestions of grouping under the different headings that will help make it a bit clearer I think, especially as I'm not sure what the problem is as I can see signs of possibly 4 different things (ASD/ADHD/SPD/Dyspraxia) That in itself makes me thing I'm going a bit mad, how can he possibly be diagnosed with all those?!?
youarekiddingme its good to hear you have experienced similar things that until now I thought were maybe just DS. Such as the setting up of his 'worlds' that then can't be touched and definitely the carrot thing I thought it was me going a bit crazy with that one (as I have been blamed for pampering to DS's needs before now but it's definitely a real issue!)
Also started reading the SPD thread as you suggested PolterGoose and love the links at the beginning, got a lot of reading to make a start on.
Thanks again, I'm sure I will have more questions as I start the process. Even though I'm already doing this for DD she is completely different to DS so it feels like I'm new to the process again (and must admit I'm not looking forward to the CAMHS process again as have found them very unhelpful so far)
It's confusing because those conditions you mentioned have some overlapping symptoms.
DS age 5 is just diagnosed with High functioning autism. I was hoping for sensory processing disorder as it sounded less bad to me than autism.
The OT said he also has some sensory issues and motor problems. The motor problems are part of the autism and he would not be diagnosed separately with dyspraxia - even though they look like dyspraxia.
DS refers to himself a few times a day by his name I.e. '*** wants a drink'. The psychologist specifically asked if he does that.
DS also too ages to learn to ride a bike. He is now doing so with stabilisers. It took him so long to be able to make the pedals push the full loop around and to repeat - he just didn't get it.
There are so many cross overs. So far we have probable HFA ASD (about to be assessed), (Camhs), dyspraxia symptomology (physio), probably dysgraphia (physio) and sensory difficulties and shut down (neuro).
Asd has many co morbid conditions and I'd say don't let them dx asd without looking at other areas. You don't necessarily need seperate dx for each area but just difficulties noted for support. Eg - DS now gets a scribe even though he's not has dysgraphia formally diagnosed as he meets criteria. I would persue official dx if support was withdrawn iyswim?
Marvel101 our DS's sound quite similar
youarekiddingme that's great advice about making sure they don't just diagnose one thing without looking at other areas, but can I ask how did you get all areas looked at did they come from the 1 initial referral? Or did you have to request different referrals?
From my understanding referrals here go to CAMHS but from my experience with DD they don't look at all areas as she definitely has some sensory issues but has only been referred for ASD assessment? So would this come later or is it assumed sensory issues are part of ASD?
Sorry so many questions but I want to do what is right and get the outcome that will help DS (and DD)
Dis was always under pead for allergy/ constipation. He then had the funny sensory phenomena, sports, twitches, absences and a seizure so pead referred to neuro and GP did too. I saw a physio privately because of DS constant pain in joints - half hour and £45 later he had him sussed!
We saw salt at suggestion of Camhs and EP on suggestion of pead.
So really just everyone referring on to more specialist areas iyswim?
Neuro developmental disability is not an exact science. It's not like diabetes for example where there are accurate tests.
They'll investigate and find the best fit. Writing down all your concerns is a good place for the to start from. After all autism is dx by a number of certain behaviours that meet a criteria. Having one of these behaviours does mean you have asd. 4/5/6 behaviours does not eat ASC unless they are certain behaviours, in certain catagories iyswim?
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