2yr old DS possibly autistic - help!

[lottytheladybird]

Just been recommended to join the special needs board!

My DS is 2yr & 2m old and we're seriously concerned that he is autistic. He doesn't wave or point, has poor eye contact, doesn't give things to us when requested, takes our hand to help him with things, doesn't do pretend play and isn't talking yet. We took him to see our GP on Tues, who's referred him to a paediatrician. We don't know how long it'll take for the appointment with the paediatrician to come through.

In the meantime, we really want to help our son. We are so worried. What help can we get privately? Any advice would be welcome. Thank you!

Agree with Dev. I'm in the midlands - do pm if you want to chat or are based near.

Look for ABA yahoo group - I find it a great source of info.

What does NT stand for please?

Sorry, NT = Neurotypical

Another one who does ABA (Verbal Behaviour) and would definitely recommend it. I only wish we'd started earlier (ds was 3.6 when we did). It doesn't have to be an all-consuming thing, and after a while it settles down to become part of normal life and the normal mode of parenting. It was amazing - it suddenly showed us how ds could be taught things we thought would never happen (having conversation, normal communication, interacting with other children etc), and transformed our lives.

We were offered absolutely nothing when ds was diagnosed two years ago, and in all that time have had only 4 1-hour sessions of social skills playgroup provided by the NHS. There's almost always a huge waiting list for SALT.

It can be expensive when you factor in consultant/tutor costs but imho if you have funds to do it even for a year you won't regret it (as long as you choose provider carefully).

Do PM me if you want more info, happy to share.

NT = neurotypical

Thank you for letting me know what NT stands for.

We would like to give ABA a go, as it seems so highly recommended by all of you lovely people. What's the best way of finding a tutor? I had a brief look at Peach. Do you have to have an assessment before you can undertake ABA?

Worth speaking to and meeting all the providers who would cover your area. PM people on here or use the ABA yahoo group to find contacts (also google of course). There's also PEACH, VB community, ABA tutor finder websites to help with finding tutors. I emailed our nearest university psychology department and got lots of responses from keen (and cheap) students. A couple of those are working out really well.

The provider/consultant will do an assessment themselves but would be unlikely to need NHS assessments at this stage. Choose your provider carefully - I had one who just wanted me to sign up before even meeting me or DS.

PEACH are very helpful on the phone too.

Yes you need to choose your consultant (or provider) first. The ones mentioned below (Duncn Fennemore and Sean Rhodes) are big names within the field. I would recommend talking to several different ones to get a feel for each, and get a feel for the kind of programme they would set.

Books worth looking at are Mary Lynch Barbera 'Verbal Behaviour', and Catherine Maurice. Also Robert Schramm 'Motivation and Reinforcement'.

New southampton clinic is called ABA clinic and is run by ABA consultant Francesca degli Espinosa (very good). If you put all that in google it just pops up, but I don't know how much it would cost. Sean Rhodes has the ABC clinic and should also pop up if you google - he is v good too. Duncan fennemore comes under ceic clinic I think - in London, also v good.

I have been doing some research into ABA. How many hours per week of tutoring is ideal?

We have had a variety of amounts, ranging from 24 hours at the highest end, to 6 hour at the lowest (tutor recruitment problems!). The average has been about 18 hours a week at pre-school age.

Now ds is at school we have one day a week ABA shadow at school, and 6 hours after-school spread across the week.

Imo anything more than 12 hours a week will make a huge difference. You (and everyone in the family) also have to remain consistent with the approach the rest of the time though - but it's not so radical and just becomes the way of parenting even if you do lapse sometimes and get shouty

Agree with Bialy anything above 12 hours is brilliant. At his age, the maximum recommended would be 30 hours. While it is important that he gets as many as possible, in my experience 10 hours of excellent quality tutoring is better than 30 hours of sub standard tutoring.

I would also suggest that you ring around consultants as soon as possible as they generally have a waiting list. The first visit is always free no matter who you choose of all the consultants/providers mentioned on this thread. They will be able to point out other families localy who you can use as reference and for anything else you might want to know. Also suggest that you contact the local NAS branch, they will be able to point out other parents who are doing ABA which is another potential source of proven tutors.

Another one who does ABA. We started ABA at 2.10. We should have started 6 months earlier but got sidetracked by fake promises of help elsewhere.

We did all the tutoring ourselves and just paid for an initial workshop and then 8 hours a month supervision (2 hours per week). We managed about 15-20 hours a week between me and DH - which reduced when life got stressful / we ran out of steam. We also started the process for a statement of SEN at 2.5 - after various refusals and appeals we got ABA funded via tribunal just before DS turned 4.

15 hours was enough to achieve good progress and to prove our case at tribunal. Of course we would have liked to have done more / had proper tutors but I am just posting to say that even a little bit can make a difference especially as you will, as Bialy says, be changing the way you respond to him outside of therapy.

Its also actually really comforting to be given set programmes and be able to do something positive for your child, to feel you are helping rather than just sitting waiting for help, which sadly once (if) it arrives is often woefully inadequate.

Wow, 30 hours/week! How do you carry on with normal life (going to toddler groups etc) with so many hours of tutoring? After some ABA tutoring, is it something that you feel parents can take on and continue themselves? I'm willing to put in any amount of work.

Agnes - That sounds like a great way of doing it. Please can you let me know who you did the workshop with?

Autism Partnership in Leeds - also have staff in London and office in Cheshire.
Not sure thats near you but you should be able to find someone who will do supervision only and do the tutoring yourself.

We managed to do it ourselves for a year - it got hard to fit in nearer the tribunal & maintain over time (mainly as DS was a terrible sleeper and we were exhausted) - I was ready to give up and hand over after a year tbh, but if we had lost I would have kept on and it would still have been 100 times better than the provision we were being offered.

Many tutors are psych graduates or don't have previous experience so for us it was having a good supervisor to design and demonstrate the programmes that was crucial - implementing them was not that hard. DS went part time to nursery and the nursery staff agreed to use bits of ABA too.

Some charities eg Caudwell have funded ABA

If you think you might end up wanting ABA funded by LA under a statement you will also have to factor in the cost of a private EP and ABA report and of taking EP and ABA as witnesses to any tribunal. Sorry thats a lot to take in but for us we needed to save the money to get the reports to prove ABA worked and it was more important to spend the money on that than tutors. We were so skint by tribunal we got there on petrol fumes but we won 35 hours a week so it was worth it.

My 'More than Words' book arrived today! Looks really useful - thank you so much for the recommendation!

Great, it's a good book.

Don't worry if it all feels like an exercise in making your DS' life difficult. In a way it is as we get so good at anticipating their every need, we are accidentally discouraging communication. This was very much the case for me - obviously didn't have any effect on my NT DD, but with DS (ASD) he had no reason to communicate at all!