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Long Way From Diagnosis, but word Austistic out there...

(48 Posts)
Tee2072 Thu 14-Feb-13 15:12:44

My son is just 3.9 so not old enough to be formally diagnosed, but he has been accepted into a program in preschool that has started with an educational psychologist evaluating him.

We had our second meeting today (first one was just 'tell me about your son' sort of thing) and he is definitely behind in social skills and communication. There are also some concerns as he's not toilet trained and his 'ham fisted' in holding a writing instrument, but it's the social/communication aspect that has flagged up 'autistic traits'.

So we have a plan in place to help him over the next 6 weeks or so and then meet again and see how he is.

If he does, eventually, have an autism diagnosis, he is probably very far down on the spectrum as in most areas he's right on target or even a bit advanced.

I'm not even sure what I am asking, really, just sort of writing it down.

Thanks for reading.

My Ds was Dx at 2years 3 months.

And he is very very HIgh functioning according to some.

Anyway. Welcome to MNSN board. Just fire off questions trivial and serious and someone somewhere will have an idea what to do.

Tee2072 Thu 14-Feb-13 15:39:48

Thanks Starlight. smile

silverfrog Thu 14-Feb-13 15:43:06

Hi Tee. Welcome to MNSN, but sorry you have to be here, iyswim.

There isn't really any such thing as 'too early to be dx'd'. Dd1 was dd's at 2 as well.

Observations are well and good, but do try not to let people push y

DameMargotFountain Thu 14-Feb-13 15:44:29

hello Tee and welcome

sorry to see you here, but happy iygwim

DD was diagnosed age 4.10yrs, she is HF but this does not make her autism 'less'

please ask lots of questions, there are some fabulous people here who give brilliant advice, and we all try to help each other out in any way we can.

<makes brew>

silverfrog Thu 14-Feb-13 15:45:18

Grr phone.

Push you into 'wait and see'. If your son is having difficulties in any area there is,IMO, very little point to waiting and seeing if it comes good of its own accord.

Take some time to absorb this news, it can come as a shock if you have previously not had concerns.

Do ask anything - someone here will have been through vey similar/know the process in your area/etc

Tee2072 Thu 14-Feb-13 15:54:46

We aren't waiting and seeing, actually, there a plan in place to help him. The only waiting and seeing we're doing is to see if that help helps, IYSWIM, and then he'll be referred for diagnosis.

We are lucky in that our Ed Psych is also the Ed Psych for the diagnosis team so if it is decided to go forward to a diagnosis all she has to do is sign the papers! No one else to talk into it.

I am happy with the direction we're going so far. But thanks for the responses and the support!

EllenJaneisstillnotmyname Thu 14-Feb-13 15:55:27

Hi there Tee. It's great that your DS seems pretty HF, it should help him to progress. My DS was DXed at 3.5 with HF ASD, but while he's managing we'll with 1:1 in MS school aged 13 now, I couldn't have told you at 3 how he would be affected. He's also pretty obviously autistic in a flappy, spinny way. grin Can't imagine him any different and love him to bits, as I'm sure you do your DS. His fine motor skills/organisational are poor, (apart from mouse control, obviously!) so meets quite a few dyspraxic criteria as well, lots of crossover.

I've seen you around, I hope you are finding MNSN a really useful and supportive place. smile

silverfrog Thu 14-Feb-13 15:59:30

Sorry, I don't think I was very clear. It does sound as though your pre school are being proactive, which is fab. What I meant was that quite often (if you took a poll on SN, I think the positive answers would be very high) the end result of observations such as you are describing is wait and see and we'll review in X amount of time. It was a kind of a heads up about what might be said to you in the future, rather than now.

Tee2072 Thu 14-Feb-13 16:01:20

Oh I see what you mean silver. Yes, if we get to the end of this first 6 week plan and they say 'and now we wait and see' I plan to say 'yeah, no.' grin

silverfrog Thu 14-Feb-13 16:05:17

Ime, initial observations end with 'we'll be back in 6 months to review'! I am still livid that I was sucked in by that, and dd1 was only about 15 months old... It was only when we lost the plot and refused to wait any longer that she got her dx. She had been in the system for 18 months by that point, with various observations and histories being taken, but no intervention/help given. It was simply a way of managing wait

silverfrog Thu 14-Feb-13 16:07:13

Grr wriggly ds that time!

Waiting lists. Which reminds me, try to get your ds onto waiting lists now if you think he'll need them - eg SALT - you can always cancel if you don't need the appt, but time gone by now not on a list is just time wasted.

PolterGoose Thu 14-Feb-13 16:42:56

Hello there Tee, you have definitely come to the right place.

My ds has a dx of Aspergers and is very academic so is considered high functioning, but is still really quite disabled by his autism, affecting every aspect of his life. The earlier the interventions start the better, so I would be pushing for an OT assessment ASAP in your position (and with the beauty of hindsight) because they will, if any good, provide a range of useful practical suggestions that, certainly for ds, make a significant difference. It is also really helpful because OT can advise on any adaptions required by school when he starts. Doesn't mean school will do it but that is another issue, having OT on side helps.

Are you starting to think about the move to school? Our early years Senco arranged a fab transition plan which made the move from nursery to school pretty seamless. It is worth starting well ahead of time.

Our journey to dx took about 18m from referral, but really started about 3 years before that, if I'd known more I'd have pushed from around 2yo when it was actually quite obvious that he was on the spectrum.

ouryve Thu 14-Feb-13 16:48:45

Welcome to MNSN, Tee.

DS1 was diagnosed at 3y6m and DS2 at 2y4m. It's definitely not to early for diagnosis.

zzzzz Thu 14-Feb-13 17:01:05

Another voice saying get on the waiting lists and back off if you don't want to do it. We are still in the holding pattern and ds is 7, ASD dx still floating, language now probably within our grasp, we were first seen at pead at about 3.2.

Here the waiting list for the new diagnostic pathway is 18months plus, then several months for them to gather their thoughts so there is no run away diagnostic process. This is good because it can be overwhelming and time to absorb helps, but ultimately this is very bad for our children because the vital help at reception and year 1 is often not in place.

My advice would be to get a good understanding of terminology and what provision is available. Use this board, no question is too silly, and we are not easily offended by terminology or lack of knowledge.

Start helping your son now. DO NOT WAIT to be told what will help, because you will waste years.

And.....hi! grin

Tee2072 Thu 14-Feb-13 17:25:40

Thanks for the advice, everyone.

I'm in NI so I don't know if things are different here but I will check out what you're saying about waiting lists and times.

www.simplestepsautism.com/

Then this be what you're after!!!!!!!!!

thesecretmusicteacher Thu 14-Feb-13 18:05:01

"So we have a plan in place to help him over the next 6 weeks or so and then meet again and see how he is."

that's good. we had similar from 3.3.

Is the pre-school connected to the main part of the school? It's wonderful when you can get that kind of continuity.

Tee2072 Thu 14-Feb-13 18:14:53

Yes it's part of the primary he will, hopefully, go to. We hear about that the end of March.

marchduck Thu 14-Feb-13 19:16:53

Hello Tee, I'm also in NI. DD has just turned four and had dx at 3.10 - and this was after a period of "wait and see ".
DD was referred to SALT following her two year assessment by HV as she wasn't meeting language milestones. SALT saw her about 8 weeks later and referred her to child development centre. She had her first multi disciplinary assessment at 2.8; outcome was wait & see, review in 6 months. With hindsight, I was in denial (even though I thought I wasn't) - and I so wanted to believe that she would catch up.
Your wee man sounds lovely! Is he starting P1 in Sept?

Tee2072 Thu 14-Feb-13 19:28:26

Yes, march he is. Hopefully, as I said, at the school where his preschool is.

marchduck Thu 14-Feb-13 20:52:37

Sorry Tee, I missed that in your last post. Apologies if you are aware of this already, but Middletown Centre provides learning/development opportunities on social communication & interaction for pre-school children.

Tee2072 Thu 14-Feb-13 21:01:23

I don't even know where that is, marchduck. I live in Belfast but don't have a car so rely on buses and feet. grin

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