ASD in a 3 yo. What can I do while waiting for formal dx?

[Aika]

We've just seen a child development expert, who stopped short of giving an ASD dx, but referred DD to a communication development specialist. Unfortunately, the waitlist for that is 6 months. Having looked into the ASD 'flags' on the internet I am convinced that DD is on the spectrum. I'd hate to sit and wait for the formal dx as I understand early intervention is important. Can the experienced MNers advise what I can do in the meantime? I don't mind paying for a private appointment, but I am worried about what it might mean for our future options - would we have access to the same facilities if dx was from a private specialist?

The top two things I would recommend.

Research ABA.

Get hold of a copy of Hannen 'More than Words' book and work through it.

Do you have any idea what will happen when you get a formal dx?

Some LAs are better than others though all will tell you they are great.
All that happened for us was we were put on someone's caseload (who we never saw, ever), someone opened a file for us, someone else gave us a folder called 'early support' then spent every meeting after that telling us that we'd HAD the support. We had a referral to a SALT who saw us 3 times in one year and had no idea how to engage ds.

I'm sorry to paint a gloomy picture, but mostly you get the dx and then left to fend for yourself.

Hi and welcome to the SN section

I'd recommend searching out local support networks too (as well as the info and support on MN) it can be pretty isolating when you have a child with additonal needs/issues.

do you have other DCs? Where I live there are lots of activities organised that are inclusive for NT and children with ASD. These are mainly by other parents, and it's great to have access to play sessions etc where the other parents all understand.

Thank you so much for your comments.
I knew nothing about ASD 24 hours ago, that's why it took us so long to figure out what was going on. DS is very very sweet and no trouble, so we thought of him as a bit eccentric, but now lots of his traits make sense (he is very focused on what he is doing, doesn't always hear when we call him, likes lining toys, doesn't point, late speaker, refuses to be toilet-trained, uses our hands as tools etc. etc. etc. - all very classic signs I am afraid)
No idea how much help our LA would be but a 6 month wait does not sound encouraging.

Hi Aika, welcome to this board

You're probably still reeling a bit. Remember that whatever happens, your ds is still your lovely ds, and a dx doesn't change that. He's the same person he was, and will be, despite the 'condition' he might be dx with.

The main thing a dx gives you is a term which can explain why he might do/say/think a certain thing, but even that doesn't mean much other than "oh ok so he's doing that because he has asd". The most important thing imo is to do something to help - it's great that you're looking at that before even getting a dx. And our experience was same as others: get a dx and a bunch of leaflets about the NAS and pushed out of the door. We had 4 SALT group sessions a couple of years ago, and that was it- no further practical help whatsoever (though of course have a statement for school).

I second what Star said. We started ABA just before ds was dx (like you, no point waiting). It was the best thing we could have done and has made a huge amount of difference. Have a search through the archives here, there's lots of info about it.

The other thing to start thinking about (I know it's early), even just reading up on, is schools/statements etc.

Oh goodness Aika. I'm sorry for my fast unsypathetic post.

Many of us here have been in the 'system' for a long time and we see a problem and know what the range of solutions might be, and post pretty bluntly and directly.

If you are anything like I was then right now you will be all over the place caught between despair, worry and trying to find ways to be optimistic, not to mention desperate to find ways to minimise the consequences of this new information for your dd.

To help you feel on top of this, in control and well, generally not so lost, I would recommend starting a log right now and a diary.

The log is to record every phone call, meeting, conversation, internet link that you come across, with the date, time, name of person/organisation, and contact details, puting a direct quote if you get one 'i.e. development specialist quoted waiting list 6 months' so that you can manage your journey and so that, should you need to, you can quote back to people their promises with the date and time. Internet links, books etc. can be simply recorded on the log for your attention when you have the time.

The diary doesn't have to be so organised, but is a dated list of behaviours/concerns/issues with your ds that at some point you think you'll want to seek help for, or just want to remind yourself about.

And, whilst I am a huge advocate of early intervention, please take a few weeks to just carry on as normal and do nice things, whilst you unconsciously get used to things.

Thank you so much everyone for your kind comments. Please don't worry about sounding unsympathetic - I am very grateful for the reality check. I was tempted to wait for the dx, but I can now see that, as I suspected, I shouldn't be too reliant on the 'system'. So thank you very much for the book recommendation (though my Amazon delivery man will die laughing - he was around a few minutes ago and asked if I eat books or read them) and also for the diary idea - I will definitely start one. And I will take a few days (though not weeks) off.

Another vote here for ABA as soon as possible. Someone gave me that advice when my DS was 3 and I will be forever grateful to her

Worth reading around the subject too, DD is eccentric, speech delayed and a few other things, although we're not going for assessment at the moment. Reading every single book about autism and speech delay you can lay your hands on is not a bad thing at all.

We wonder if DD has hyperlexia, a language processing disorder, an ASD or is just a late talker because she's quite clever and a bit of a perfectionist. But none of the things that we would do to help if she is somewhere on the spectrum will hurt her, so we're doing them all anyway. We're seeing a Floortime/DIR consultant privately who has suggested a whole bunch if useful things to do with DD (and DS who is also a late talker). What I've found really useful from that is to watch back videos of us interacting with the kids. DD was such an easy baby, but didn't require much interaction from us, and still has quite a shallow level of communication/interaction with us. It's much easie to see that when I'm watching it played back and also to see how I could encourage her to carry on interacting with me instead of returning to her book/game.

What is Floortime/DIR consultant? Why are you not going for an assessment?

We're not going for an assessment because it's been such a horrible process so far, we really needed a break. It differs a bit from place to place I think, so don't fret. DD probably wouldn't get a DX now anyway, so might be worth waiting and seeing if she becomes a bit more 'different' when we have our review with the insensitive arsehole educational psychologist. We have all the support we'd get anyway. DIR/Floortime is another kind of treatment plan for kids with ASD and similar sorts of issues (social communication mainly). I read about it in a book called 'Engaging with Autism' and tracked down a therapist nearby.

Floortime is good stuff too. It's just a bit difficult to demonstrate it is working and evidence it like you would ABA because measurement isn't an integral part of it.

In fact the best tutor we ever had was a floortime one trainined as an ABA tutor. She did a lot of things she borrowed from floortime but measured it carefully and refined it in line with what the data was showing.

A model that pretty much combines the two is the EDSM, but I think there is barely anyone trained outside the US, so ABA delivered by tutors with excellent play skills is the next best thing - imo.

Another vote for researching and implementing ABA as soon as possible and to as great a degree as possible. Don't wait for anyone "official" to advise you correctly or tell you what to do, they won't . As I have written on here before, the NHS "developmental paediatrician" who gave us a diagnosis did not even know what ABA was (we had already started it a while before his diagnosis).

www.winslowresources.com/more-than-words.html

This is a cheap (relatively) and more importantly, in stock, supplier of More than Words. I can't recommend it highly enough. It was my bible when DS2 was DXed with ASD at 3yo.

if you want to find out more about ABA initially, look at Mary Lynch Barbera book on Verbal Behaviour on amazon which is good, readable and not too expensive. Or, more expensive option is Robert Schramm book here which is brilliant.