Here some suggested organisations that offer expert advice on SN.

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

MissDuke Thu 14-Feb-13 21:07:11

I also in NI. Thanks for the link starlight, I haven't heard of them before, very useful.

My dd is 8 and has been referred by the gp to a child development clinic, her 1st appt is in 2 weeks after being referred in December. I have many friends who had their lo dx here before the age of 3, also I am surprised at the comments on how he holds his pencil. My 4 year old ds is at pre school and the teacher says they aren't allowed to teach them how to hold the pencil anymore due to the new play based curriculum, they start writing in P1.

Good luck x

marchduck Thu 14-Feb-13 22:13:52

Tee, the Middletown Centre is based in Armagh, but runs courses at various locations, including Belfast / North Down. Sorry I can't do links, but if you search Middletown it will take you to the site. I also rely on NIR/Translink!
Miss Duke - good luck for your appointment

MareeyaDolores Thu 14-Feb-13 22:51:31

Belfast is a hotbed of top-quality ASD research and expertise

Tee2072 Fri 15-Feb-13 07:20:57

Excellent, thanks marchduck.

I didn't know that, Mareey! Thanks for the link.

I think I forgot to thank starlight for her link, too, thanks!

sickofsocalledexperts Fri 15-Feb-13 08:41:45

I would say it is downright harmful for people to be told "it is too early for diagnosis" when early intervention in autism is such a key factor. Both my DS and DSD were diagnosed at around 3 (and my DSD was/is v hf and this was 15 years ago). "Wait and see", to this old bird's cynical mind, means "we are crossing our fingers that the kid will get a bit better with age, and get us off the hook of paying out or doing any work".

"Wait and see", to THIS old bird's cynical mind, means "This kid might need some expensive intervention, lets fob off the family for as long as possible and with luck we'll push the expense into someone elses budget'!

Tee2072 Fri 15-Feb-13 09:16:07

Interesting "wait and see" means to me "let's give him help now but not assume there is a bigger issue".

Same as I was told wait and see on his potential asthma and he grew out of it.

silverfrog Fri 15-Feb-13 09:26:49

"Wait and see" is, imo, the cruellest thing that can be said to a parent. It plays right into the (absolutely natural) hopes that there is actually nothing 'wrong' with you child, and it makes it really quite hard for parents to insist thy actually something is wrong.

I found it incredibly difficult to keep going back to professionals who were telling me that dd1 might grow out of her difficulties - they made me feel like I was wanting something to be wrong with her.

We are all cynical about wait and see on this board because we have all fallen foul of it one way or another, often to our children's detriment.

I wa told by a speech therapist that we had to wait to see her as she didn't take under 3s onto her caseload. Fine. Was only 4 moths until dd1 turned 3, and this woman was the head honcho - would be worth the wait we thought. Except dd1 turned 3, and we heard nothing. When we finally pinned her down 5 months after that, it turned out her speciality was actually under 3s hmm hmm, and so she couldn't accept dd1 onto her caseload... Perfect example of being pushed down lists until dd1 could no longer be accepted. Wasted a year of speech therapy time, and considering dd1 has a severe speech disorder this is criminal and little short of negligent.

Tee 6 weeks is actually a pretty good time for 'waiting and seeing' tbh.

I think the 'let's wait and see' can actually be an active intervention over this time frame PROVIDED what you are 'waiting and seeing' for is whether the intervention delivered in that time actually produces any measurable outcomes for your ds.

So a I would ask now, what the targets are for this intervention/support, what they expect the outcomes to be, how they know the outcomes will be achieved and how they know that those outcomes are attributable to the intervention/support.

With this information, in 6 weeks, you will know all you need to know about the benefits or otherwise of waiting and seeing, plus you will have an evaluation of whether the standard support package makes a difference or whether you need to bang on other doors. You'll also have documented evidence of some of your child's strengths and weaknesses, plus the details of what kinds of things work and what don't.

Tee2072 Fri 15-Feb-13 10:01:40

I have all of that information starlight but I'm not going to find the plan right now and lay it all out on MN. Suffice it to say, I'm satisfied with the direction they are going to help him.

I almost didn't post here because I knew I would hear the stories I'm hearing of children let down by the system. It happens. We'd be crazy if we thought it didn't. Especially in these days of budget cuts all around.

But I also have to have faith that his school and this program are doing everything they can to help him, or there's no point in listening to them at all.

And if I lose that faith, I actually have access to the resources to put him into a private program.

My biggest problem right now is not the system. It's his father and his grandmother saying 'But he's only 3! How can they know! They are labelling him!!!'

To which I have, mostly, replied 'Oh do fuck off. Let them help him, okay?'

I don't think anyone is asking you to lay out the plan on MN Tee, though if the plan includes strategies that could be useful for other posters that would be nice.

However, I think what has triggered posters concern on here that all might not be as you believe, is your very first sentence that states you believe your son is not old enough to be diagnosed at 3.9.

We also know that it is brutal out there for families and getting steadily more so. When you hit a problem, it can take years to resolve if you haven't kept the necessary records, or if you have allowed slippage to mean you miss criteria or deadlines.

Tee2072 Fri 15-Feb-13 10:39:59

Well, part of me doesn't think he is. I think some of what is going on with him is his age and his personal stage of development.

Just because an ed psych used the word autistic, doesn't mean he is autistic. And I think some people on these boards see the world through the SNs coloured glasses, so to speak, and assume that as soon as that word is throw into the pot, it must be true.

And maybe a lot of the time it is true. But maybe not always.

I do appreciate all the resource links and so on. I don't appreciate the implication that I am not doing everything I can to help my son if I don't immediately contact the autistic society (or whatever it's called) and get him on this that and the other waiting list.

Perhaps we'd all get more help if less of us jumped onto the panic wagon as soon as any sort of problem is flagged up.

Thanks again for all of the help and links. I'll be back if I think of any specific questions.

silverfrog Fri 15-Feb-13 10:44:17

I don't think anyone has suggested you are not doing everything you can do, Tee.

people have written about their experiences, that is all.

no one on these boards would assume to know whether a child is autistic or not, and no one has commented on that wrt your ds.

I wish you, and he, well. And I hope your journey, however long, and wherever it may take you, is a smooth one.

Tee

'Perhaps we'd all get more help if less of us jumped onto the panic wagon as soon as any sort of problem is flagged up.'

I take it you haven't been on this baord very much before? Because if you have you'd see that there is no bandwagon. Quite the opposite.

Having said that, if your child does have a SN, it will be you and your intuition that ensures right is done by him ultimately, so do keep that confidence in yourself and your own assessments/observations.

Good luck.

LimboLil Fri 15-Feb-13 11:26:56

Tee forgive me I have only part read the last page of this thread. My child has just been diagnosed at 5. I started the process 8 months ago and he now has a firm diagnosis. We are going through statement process etc. But with hindsight, I believe that he could have been diagnosed a year, possible two years ago and trust me the last two years have been hellish. Particularly once he went into school without a diagnosis and statement and spent most of that year part time and myself in turmoil, unable to work out what to do for the best and my life on hold in terms of going back to work etc. I think my brain was in a fog of denial, I think a part of it literally shut down for a while. But as he got bigger the traits became more obvious and dealing with school issues more difficult. Between 3 and 5 I think I was hoping, praying, that it would all turn out all right and he wasn't ASD. But he so is and it became very difficult to deal with every day situations. This isn't a post to pressure you, I'm just saying you are probably where I was a couple of years ago and the road gets harder yet. And my son does go to a good school but it has still been blinkin difficult. I'm a bit post diagnosis shock if you read one of my other threads, but I have a clarity of mind now that has been severely lacking for a few years. You are right to tell you family to f off though :-) !!!!!!

zzzzz Fri 15-Feb-13 12:14:39

"Sn coloured glasses", is much crueler and ruder than I think you intend to be.

My son is nearly 8 and still has no diagnosis, in fact "is he just language disordered or is it ASD" (exhausting) was discussed again at length only yesterday at SALT assessment.

I think he is very ASDish when stressed and very language disordered when not. My Dh and I are both highly numerate and educated, his siblings are geeky high fliers though his brother has struggled more than I would expect with reading ( average rather than 5+ years ahead like the rest).

Can I reassure you that an ASD diagnosis is quite hard to get, even if your child has quite profound difficulties (eg at 3 mine did not know any names). There will be no run away train/rushed or pushed into it. Intervention at this age is entirely appropriate even for a nt child, ie it wouldn't hurt him.

Good relations with school are really important, but correct support is more so. No one here thinks you aren't doing enough or that your child has any particular dx.

I had ds in school without adequate support, and I wouldn't wish any family that experience.

I hope things go well, sharing your experiences helps everyone.

thesecretmusicteacher Fri 15-Feb-13 15:01:07

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

fingers crossed for that then. Everything has gone smoothly for my DS2 at school because of that continuity and the expertise they had built up on his needs.

thesecretmusicteacher Fri 15-Feb-13 15:12:16

My biggest problem right now is not the system. It's his father and his grandmother saying 'But he's only 3! How can they know! They are labelling him!!!'

To which I have, mostly, replied 'Oh do fuck off. Let them help him, okay?'

that's always so tricky. I suppose you just have to judge dad/grandma by how much useful time they put in playing with DS rather than the opinions they give before and after.....

ArthurPewty Fri 15-Feb-13 15:16:51

Message withdrawn at poster's request.

MerryCouthyMows Sat 16-Feb-13 08:48:37

Tee, they CAN diagnose DC's younger than 3.9yo - my DS3 has his Multi-disciplinary assessment in May, ADOS test too, and he will only be just over 2y3mo when the assessment starts.

MerryCouthyMows Sat 16-Feb-13 09:00:34

Bum. Just lost a post.

What I said was that in my family, as my Dbro has Aspergers, they are more 'open' to Autism as a diagnosis, which I guess makes things easier.

As long as they deal with him in an effective way, playing with him etc. then I guess it doesn't matter what they THINK, as long as it's not vocalised around your DS.

I'm glad you have found a supportive preschool, finding a supportive educational establishment is half the battle IMO.

I just wish I could!

MareeyaDolores Sat 16-Feb-13 21:02:49

Tee, your ds might grow out of it (with input) even if he does have an ASD. It's officially lifelong but here is a small subset of dc who lose it.

There's some good research showing it is possible to genuinely have an ASD at 3.9, but no longer be diagnosable some years on. It's called optimal outcome. What I feel paranoid about and suggest guarding against is nearly-optimal-outcome that hasnt quite bedded down, followed by losing support prematurely... and ending up with non-optimal outcome lifelong symptoms.

I thought ds1 had asd at 18m, then thought he definitely didn't at 4.9 (very good nursery). Became quite obvious after a couple of years at school.

MareeyaDolores Sat 16-Feb-13 21:05:08

'Some ASD Traits' is a useful catch-all which applies to much of the non-SN population grin

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