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Behaviour/development

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3 y/o - ASD..

9 replies

LittleMissSnowShine · 01/09/2013 13:24

Hi all,

Apologies in advance since this is pretty long but I could really do with some advice so thank you for reading!!

I posted with some concerns about this a year ago. At the time DS1 was just turning 2 and, compared with other kids of around his age, he was strikingly non-verbal. Some of his tantrums were pretty apocalyptic and his social skills weren't exactly non-existent but they were certainly under-developed. At the time, he was going to a childminder with a small number of other kids around his own age 2 days a week, he was with my MIL 1 day a week and with me the rest of the week and we were all keeping a close eye on him.

Advice on here suggested I should phone the health visitor which I did and she referred him to audiology and for speech & language assessment. He has had two audiology appointments over the last 12 months which have established DS's hearing is not the issue, though he is definitely over-sensitive to certain sounds. Not all loud noises set him off - for example sirens or lawnmowers etc are fine but hairdryers, hand dryers, vacuum cleaners and a hand drill all set him off, to the point where having to use public toilets is an absolute nightmare. Even when the hand dryer is not being used, the very sight of one sends him screaming and running for the door Confused

Speech and language assessment has been a slow process over the last 12 months. On the one hand, DS's verbal skills have developed substantially and he talks a lot better and with more confidence and a much wider vocabulary now. He is still hesitant about talking to strangers and can be very shy, but largely speaking he can answer simple questions, follow simple instructions. He is a really bright kid, in that he knows all his numbers up to 20, all his letters, can spell out / read simple words (and he only turned 3 on a couple of days ago), shapes, colours, he asks lots of questions about how things work etc.

On the other hand, some of his behaviours (like the over sensitivity to sound mentioned above), along with being fairly slow to master toilet training (he's getting there...but slowly), a complete inability to share or take turns with other kids, huge melt downs and tantrums when we are out of the house (screaming, tears, lying on the ground, shouting), a real dislike of anyone apart from our closest family members visiting the house, are very concerning. Around the house, he's not too bad, a bit of a handful but relatively easy going. Outside of the house (or if we have any visitors round, even for a short time), whether we're at the supermarket, the park, anywhere really, he is completely unpredictable and you never know whether you are going to get a typical toddler or really terrible behaviour.

Things have been intensified by the arrival of DS2 a couple of weeks ago, DS1 is pretty keen on his new baby brother, but his tantrums and other negative behaviours have increased substantially and he is supposed to be starting playgroup in a week's time and I have no idea how on earth he will manage it.

We are starting to feel a bit let down by the system. It's been 12 months since health visitor first sent DS for referrals. Audiology took 11 months to complete their assessments, and the consultant told me he definitely felt that DS should be referred for ASD investigations and he would write so in his notes, and we should pass that on to speech and language. He had another appt with them a few weeks ago and the therapist he has been seeing seemed inclined to agree, despite his obvious progress in using language, that he is probably somewhere on the ASD spectrum, albeit fairly highly functioning. However she has now left her post and we are supposed to have another appt in October with her replacement to discuss the possibility of ASD investigation referrals and do a questionnaire. It all feels very slow and meanwhile, me and DH are finding DS1's behaviour increasingly challenging to cope with, especially with a new baby to look after. I am at the point where I am wondering if I need to consider not returning to work in the new year when my maternity leave comes to an end, because I don't feel that we can leave MIL to cope with DS1 and DS2 when DS1's behaviour is so tough to manage. But I find the prospect of being at home with both of them daunting, since DS1 is such a handful and we have had no real help or support at all. I also feel for him because he is very sensitive and affectionate and he spends a lot of his time upset, stressed out, angry and frustrated, which can't be hugely beneficial to him.

So, where to next? What do ASD referrals usually involve? How long do they take? What can we expect? And does anyone have any recommendations of books we can read, websites, anything at all to keep us going in the meantime...? Thank you! Sorry again for such a long post ThanksThanks

OP posts:
mummytime · 01/09/2013 13:35

I would start by keeping a diary. Note down any behaviour you find difficult, or odd or...
I would also go to the MN special needs boards to get more help.
I would also go back to the GP and make sure it is noted that you are find his behaviour increasingly difficult and need help.

Is he going to a nursery or playgroup? If not I would get him in one, even if it seems as if he will find it hard to cope. Their assessment of his behaviour will provide more evidence, they may also be able to access other areas of support. It will also help towards accessing SEN support when he is of school age, or even a statement.

You can also contact NAS for more support and guidance.

chocnomore · 01/09/2013 13:36

not quite clear if you have been referred but it seems not.

go to GP (or HV if any good) and ask for a referral to a developmental paediatrician.

there is likely to be a wait (we waited about 6 months
to be seen but every area is different.).
during the first appointment you will probably just discuss your concerns. paed might want to know about milestones etc. then there is often a 6 months wait and see... and another 4/5/6 wait and see. if there are still concerns you will be probably put forward for an assessment such as ADOS (again usually quiet a long waiting list). everything takes ages :-(

but the first step is really getting referred to a dev paed.

oh, and pop over to the special needs: children board.
there a loads of mums with DC with Asd ;-)

insanityscratching · 01/09/2013 13:46

Ds and dd were diagnosed within 6 months at ages 3 and 2 respectively. Ds was pretty classic autism and dd was diagnosed quickly because whilst she didn't present typically having a sibling and an experienced mother added weight.I would ask for a referral to a developmental paediatrician. If private is an option I would recommend contacting here

PolterGoose · 01/09/2013 18:44

This reply has been deleted

Message withdrawn at poster's request.

LittleMissSnowShine · 01/09/2013 21:24

Thanks for all your replies!! We're in N.Ireland so possibly a slightly different system but one reason SLT didn't refer DS to a developmental paediatrician from the off set is that aside from his lack of verbal communication skills he didn't have much else in the way of classic developmental delays. Now his speech is catching up so it's really only DS's social skills and his toilet training that I could really say are obvious 'delays'. However, in the system here, once a child is over 3 they get referred to a more specialised ASD investigation clinic which SLT thinks might be more the route to go down. I feel like the SLT we have been seeing has been quite good but the admin side of things is terrible and we never get appts when they are due without at least 3 phone calls and now she has changed to a new post I can imagine things will be worse!! Confused

Thanks for book recommendation as well Smile

So far we have been following a trial and error system, trying to avoid situations which are likely to be just too fraught for DS to cope with while still allowing him to try new things and interact with other kids. Some activities work well - he likes the cinema, for example, the park, a short trip to supermarket, visiting family or close friends houses, playing with the other kids he knows v well at the childminders etc. Things that don't work too well are parties or places too over crowded with other kids or having too many people in our house.

He is moving from the childminder to playgroup next week for a variety of reasons, a big one being that a house move has put her quite far from us and another is that I want to give him a chance to spend a year (if things work out) in a more structured environment before he has to go to school but I am really worried about how he will cope and also how I will cope with him if we can't get him to settle in a playgroup scenario.... Only time will tell I suppose!

Thanks again for all your advice ThanksThanks

OP posts:
sophj100 · 01/09/2013 22:35

It was the same for us - at least 18 months from referral to diagnosis. As long as the time waiting is spent with help from SALT and OT, (which is invaluable for both my sons and me), then you should feel you are moving forward, albeit slowly. The meeting with the Developmental Paediatrician is the one who will be able to give you an overall picture of what is going on, neurologically speaking.

My sons have no problem with a lot of noises, police car sirens etc., but cannot abide the hand-dryers in the loos, particularly the speedy ones which just send them loopy and we have to leave fast, hands on ears.

I also agree - post something on the Special Needs board, there are so many mums facing the same problems and you will find much needed support. Good luck Smile

CountBapula · 01/09/2013 22:45

Just on the hand dryers thing - I think it's pretty normal. My DS is nearly 3 and hates them too - to the point of refusing to use public loos. He's also not keen on hairdryers, drills, my hand mixer or any public places that are loud and echoey - he'll often burst into tears in those situations. As far as I know, he's NT. Several of my friends with kids the same age report the same problem with hand dryers.

I don't know about the other stuff, but thought I'd post in case that's at all reassuring.

LittleMissSnowShine · 03/09/2013 09:58

Yes, I have noticed hand dryers are a bit of a pet hate for a lot of toddlers!! Our biggest problem is the severity of DS's reaction to them - using the disabled toilets, for example, doesn't help because it is the very sight of a hand dryer, even one that is not being used, that really sets him off and it is very difficult to persuade him to use the toilet once he gets going and that obviously increases the chances of him having an accident while we're out which sets him off again. When we were at our last SLT appt a few weeks ago, I had to take him to the loo mid-session and she was waiting at the door for us to come back so she saw first hand the state he'd gotten into just by seeing a hand dryer in the toilets, which I was glad about because I find people seem to think you are just over exaggerating and that DS just needs to be "de-sensitised" to sounds he doesn't like. As if it were that easy!!! HV is out tomorrow to see DS2 so I might mention it to her again then and see if the best thing to do is leave his referral to OT / ASD Investigation clinic in the hands of SLT or if there is a way to move things along a bit...

OP posts:
CountBapula · 03/09/2013 11:53

Actually, I have the same problem with DS - he won't even go in there if there's a dryer - cries and freaks out. I mainly use a travel potty, which is a pain, but saves a lot of angst.

Hope you get some answers soon.

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