Feeling rather lost regarding DS's learning difficulties...

[*Marti*]

Sorry, not sure what I'm after really, just want to voice it all and not really sure what I want anyone to say.

As some of you may have saw I have always worried about DS, he has never made eye contact or responded to his name and as he is getting older and should be making social developments, its becoming more startlingly obvious that something is wrong.

Luckily my health visitor and nursery SENCO people have been fab but its all happened in the past two weeks with hearing tests being arranged, portage put in place and me having to admit there is definitely something wrong. Portage were very frank, which in a way I like to have the bare facts but its also scared me and left me with loads of questions.

I have suspected he may be autistic from about 10 months old, and I think portage and SENCO think this also, as they have decided to tailor his sessions as if this was his need ready for a diagnosis before he is 3. The HV has not stated this but instructed a hearing test and to go from there.

Its a long time to wait until hes 3, Ive also got to wait another week for his hearing test before we can arrange SALT and waiting for portage to give us their first session date. Im glad everythings happening but I also feel like Im desperate for them to do something NOW because my little boy needs it.

Any ones experience on the system and how long it took them to get a diagnosis and how their child behaves would be appreciated. I know not all children on the autistic spectrum have the same characteristics but its nice to know im not alone. I have all of these worries for the future, will he get worse? Will I be able to handle him etc...

Sorry this is quite a down post. I know I should remain eternal optimism but im 95% sure he has ASD and just want everything in place so we can help him.

Thanks if you got this far.

[Pancake01]

Got no idea, no experience, but it's got to be a good thing that they are looking at it now. Lots of until someone more useful comes along xxx

[*Marti*]

Thanks Pancs

[Mrs B]

Oh sweetheart, sorry to hear you sounding so down, it's not like you. Have no idea about practical advice but wanted to give you loads of these too. How old is he now btw?

[*Marti*]

He's coming up for 18months x

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[LibertyGal72]

There's a wealth of Damsels on here with the info you need ... am sure they'll be along soon. I couldn't read and run so sending At least you are now on route to figuring it out, as hard as it is. Best wishes x

[Rosa]

Marti, you sound down, but also like you are informed and doing the very best for your wee boy. I hope you can get the help you need xxx

[zwinnie]

Another one with no practical advice, but just wanted to send you a huge, huge hug - I can only imagine how you must be feeling.

xxx

[Peridot]

Hugs marti, from what we've chatted about you are wayyyyyyy more proactive than I was and I think that will make a huge difference.
Have you got in touch with your local national autistic society? They may be able to help with the road to diagnosis as its different in every area.
For us it took a while but mainly because they want to try salt etc first to see if it made a difference before they referred Thomas for an official diagnosis... My Hv filled out all the relevant referral forms to get this done.
Looking back at what I would change if I had the chance - it definitely would have been to push for an earlier assessment by a peadtrician - if we had've done this T would've been diagnosed by 2.5, not 3.5 and I look back at him age 2-3 and just think it would've helped him so much.
So that would be my suggestion for now, I know it's hard when you just want to get things done now and it's all a waiting game... Cold be worth researching if there are any nurseries aimed at children with autism in your area... This woulve helped T so, so much.
I know how you are feeling right now and I know it's so hard but mist autistic children make such a huge improvement with the right support xx

[redhed]

Ooookaaaay....

I don't have ASD-specific experience of the system, and tbh it will vary a LOT according to where you live. So this is mostly me talking from what other people have told me. Your issue is that before school age (ie before 5) this is a slightly grey area in law. It can be difficult to get decent provision before that age, because technically he is not of school age and is in childcare rather than education (EYFS notwithstanding, I mean in terms of the law about education provision not in terms of what nursery should be doing with him.) So many local authorities would consider you have no legal right to specialist provision whatsoever and often what is provided comes from the NHS and/or the voluntary sector like Portage.

At the same time, it's been clear now for a few years that "early intervention is key" (as they say) but this is entirely theoretical when there is no early intervention available. So LAs are being pushed to do something earlier, but what is very much up to them.

Meanwhile, though it's a disorder that you can diagnose early in some cases, in others it's not identified till the child is in school, and there's always a possibility of misdiagnosis, or at least of diagnosing the wrong thing or missing a co-morbid condition. So each NHS trust will do the diagnosis process differently, and the age they will diagnose at and what they use to do that process will also differ.

All of which means you need to ask SALT and Portage about the diagnosis process and how it happens locally and what is available between now and school age. Also (if they seem to think there's a high probability of an ASD diagnosis) then I'd urge you to get in touch with your local branch of the NAS. It's a fairly common condition and though it's varied, the issues parents face are not. So they will be absolutely up to speed with the problems ahead of you and will - for instance - have huge experience of eg any specialist nurseries locally, and the reputations of all the schools.

Re: where you are going from here - yes, you are right it is a very varied condition. To the point where my guess is it's actually a condition with more than one underlying cause because there seem to be some distinct "flavours" of ASD though of course there's a lot of overlap. So it's not just about severity and communication problems; it's about whether there are sensory issues & about how far the rigid/inflexible thinking bit manifests in harmless ways and how far it tips over into affecting ordinary life. Those sorts of things, I'm afraid, do seem to evolve as they get older so though you can get an inkling it's hard to predict forward at this very young age. Sorry, that's not what you want to hear I'm sure.

If I've got one tip - it would be find his motivators. That's going to be a bit of a theme, and it's one of those things that can help you early. If a child has social/communication difficulties, it's very hard to motivate them by praise which is, when you think about it, a social/communication reward. You still have to do it - it's more essential than ever to do it because they need to learn much more deliberately that if people praise them, it's worth doing that thing again - but at the same time you still need to get him to behave himself in public and having a "failsafe" reward will be key. Absolutely key. And finding his triggers - again you may find that he kicks off more readily than his peers and if his world is more confusing than theirs he may find it hard to control. If that's the case yes of course you need to help him work on that but if eg crowds are a trigger, maybe work on that at a family party. Not Christmas shopping. So I think one of the most useful things you can do at the moment is to stand back and observe a bit, and see what he really likes and what he really doesn't.