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.

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

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.

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!

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.

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

Message withdrawn at poster's request.

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.....

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.

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.

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 :-) !!!!!!

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.

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.

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.

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 10:01:40

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?'

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.

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.

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.

"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'!

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".

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!

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

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

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

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

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

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.

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