The road to ABA

[Mannah]

We are a family living in Birmingham. We have a 22 month old daughter who
has not yet been diagnosed with ASD, but we feel as her parents we cannot sit around waiting for the NHS. From what I am reading early intervention can do nothing but good regardless of diagnosis.

We are really keen to start ABA, but would like advice from other parents in
the area who have started their own program. We have contacted UK YAP and PEACH. Any advice from people would be helpful.

Well done for being so proactive.. The earlier you can start intervention, the better it is and I am not just talking about ABA.
Do not rush into it would be my advice... Do your research about the different providers and make sure you are comfortable with their approach. Get them in to see you and your child at home and see how they interact with them. The first visit is normally free..
With regards to selecting tutors always take up references, tutors will be the ones doing the majority of work so they will need to be the right people for you and your child. Finding the right tutors will be your biggest challenge when starting ABA.
There is a lot you can start by reading some books... "More than word" is a very good book which is very easy to follow and full of useful advice.

Doesn't matter how desperate you get when you are looking for tutors, my advice would be to always remember "No ABA is always better than bad ABA" and I am speaking from personal experience.

That was one of the thing I wanted to know as it seems like you are just allocated a case manager, is it reasonable to ask to meet a family that the case manager is working with, with a child similar in age to my own and sit in on a few sessions to be sure that this person will be right for my child and that I feel that it will benefit my child. Just wanted to check I wasn't being over the top and this is a reasonable request. As for tutors I would like to employ for about 15 hours and do the rest myself so I would prefer someone with a bit of experience behind them as my husband and I will be the untried horses.

What other interventions would you start aside from ABA. I had a private assessment with a SALT and she said the best way she could help would be to try and speed things along to get my child assessed by the children's center.

I joined speechquest.net which gave me some ideas for play. I sit and chat in simple language while she plays and try to encourage imaginative play but she is not showing a jot of interest. I just want to be able to communicate with my child and I dont want to sit about waiting, I feel like I am watching her slip further and further away :(

Families generally see a case manager every few weeks as they tend to be expensive to hire so you might not be able to sit in a workshop with the case manager, but during the initial visit which normally lasts a few hours, you can ask them anything and everything, they will also meet the child and try to engage them etc. we had three consultants visit us at home when we were starting out and after talking to them we knew instantly which one we wanted to go for.

The case manager should give you details of the families they are currently working with and families are normally very willing to help and most of them would be happy for you to come and see the actual sessions with the tutors. I would definitely recommend talking to other families and taking up any references the case manager/tutors are offering.

Waiting is the hard part, I understand exactly what you mean by seeing your child slip away. The good thing about that is you can do something about it. Seriously while you are waiting to start ABA, buy the book "More than words", apply its teachings and you will definitely see a difference.

Don't worry about imaginative play at the moment. Go back to basics, peekaboo, rough and tumble play etc. worked best in engaging our ds. Keep the play simple and play alongside her. Encourage her to join in, but do not force her.
cause and effect toys are good, something that lights up and sounds when pressing buttons are good. See what she likes and join in.. keep the language simple and even though she might not seem interested now, it will pay off soon.

I don't know much about your dd's issues whether she is verbal, anxieties etc, so would hesitate to recommend other interventions. A good ABA program should incorporate elements of OT, SALT etc but if you can see a SALT privately who specialises in ASD, then that would be useful. HTH

Thanks Dev. I have already ordered the book so hopefully it will be here soon.

You are welcome.. Keep posting if you need any more info. There are a number of posters here who have used ABA successfully and know a lot more about it than I do. I am presuming that because it is the end of easter holidays, they are either trying to make the most of their time with their DC's or they are simply too knackered after spending two weeks at home with them..I have a feeling it might be the latter.
There are a number of books which explain the principles of ABA and should help you be better informed when dealing with tutors, case managers etc. I will see if I can dig them up and will pm you the list tomorrow.

If you don't get many responses, bump this thread next week when they are likely to be around. Good luck.

I'd also consider looking at dietary stuff, excluding gluten and casein can be very significant for some children, and I wish we'd done it sooner. Lots of advice on here.
Yes, well done for jumping in, I don't think that can be anything other than beneficial. I think if ABA feels like the best thing for you, I'd echo the advice to find providers you really resonate with, and will be comfortable working with.
There are other approaches, like son-rise, which we used with our ds, and I really recommend. It's very different to ABA, though, and you need to find something you can totally get behind and commit to; it might not be right for your dd/ family. Good luck.

Do not waste your resources on learning everything from an expensive professional, including the basic principles of selective reinforcement. You can do that yourself, and save the expert for the hard stuff. efinitely get the Hanen book. And the peat NI DVD, plus this ABA book

A mumsnetter from here is running a one-day ABA course in Brum, and an ABA school in London sometimes has training events

Remember that although ABA is a superb teaching method, your real challenge will be determining what to teach and when. Alternative approaches like Floortime and RDI can give you some ideas to make people more reinforcing, which is a great longterm help for everything else you will do. The NAS website talks about spell (structure, predictability, empathy, low arousal, links) which is useful to have as a background for any programme.

The TEACCH approach (as used in the UK anyway) is a bit of a mishmash, but take a look at this fabulous book and I guarantee you'll want to steal lots of the ideas. Having knowledge of the various options also helps later, when you may have some differences of opinion with the educational authorities.

Finally, stick around on here, get on the w/list for portage, keep exceptionally good records of everything including what seems like trivia, and have a look at IPSEA and SOS!SEN at least 2 years (yes, really) before school is due.

Blimey Maria!

That post should be put on a leaflet and given to every parent post dx.

Superbly put Maria.

OP Maria has put it much better what I was trying to say about the consultants. She has also linked the book I was thinking about.

Just remember that whatever program you choose to go for, never let a Professionals dictate to you what you should be doing. You know your dd best and if you are uncomfortable about something, trust your instincts and question it until you are satisfied that it is the right thing to do for her. They might be an expert on conditions dx etc but you are the expert when it comes to your dd.

. Obviously my thinking somehow becomes clearer when sleep deprived, travelling back from seeing mil, and trying to post on a phone when there's no reception! Will remember that when next trying to pen something for officialdom!

Just some quick points as the kids are revolting!

Sadly, for us, portage and SALT were worse than useless. They tried to apply methods that would work for NT kids, and failed utterly to realise that without being highly motivated and reinforced, ds1 would never engage with anything they (or anyone else) tried to do, let alone learn anything.

The hugest gift ABA gave our son was teaching him how to imitate. Because of that he can now speak, play and interact. As well as things like use cutlery to eat, try new foods and learn all kinds of self-help skills

It's very important to note that you do NOT have to go with an expensive all-inclusive provider and you don't have to do masses of hours a week. I never considered BA when ds1 was diagnosed at 23ms simply because I knew we could never afford the 40hr pw programme that I read was essential. Then a wonderful woman I met on here told me that was nonsense. To cut a long story short, we found an independent consultant and were lucky enough to find 3 great and experienced (independent) tutors. Who between them did 12 hours a week with ds1 (who tbh was too young for anything more at the time) for the first 6 months, until we won funding and were able to increase his hours.

Those 12 hours a week brought huge, huge progress.

It's always, but always, quality over quantity. I know of several people who have not heeded that principle and their programmes have gone to pot. Whereas one friend has 3hrs a week with a superb tutor and her son is progressing magnificently

Thanks so much to everyone who has posted. This is a really overwhelming time for us (as you probably all remember) I have a LOT of reading to do. I appreciate that I have your experiences to help me go into this a little bit wiser, I am so glad I found mumsnet and will probably be on here regularly to pick your brains or for support. Thanks again.

This thread has been helpful for me to read. Thanks googlyeyes for the very helpful post especially. We are just in the midst of starting a programme (have seen the consultant for an assessment and am busy recruiting tutors), and your comments are very reassuring in the midst of all the things going on!

What struck be particularly in your post was the bit about learning to imitate, that had not really crossed my mind before as being the main obstacle, and the consultant told us that this is absolutely the number one thing that has to be worked on before anything else. It all fell into place for me then I think. My DS understands a lot, observes and is very interested in things and people (well adults, not other children), but I realise now that he just does not try to copy anything just for the sake of it (although he will copy actions to get something, like operating the iPad , loading in a CD etc, he won't just copy what you do without a functional reason). I realised he is going to have to be taught this skill, which NT children just have automatically. This has really helped my undetstanding of his little world and how we are going to help him.

Mannah it is all rather overwhelming I quite agree. We are going to try and get a 30 hour programme going (some of the sessions however being done by me, DH and our nanny), and it seems like a lot to do!

I am having to go through the motions of attending SALT groups run by the NHS etc, even though I know they are not likely to do much, because I do want to be seen as a co-operative and not a bolshy parent when it comes to getting help and (fingers crossed) some funding down the line. I am not sure if that is the right thing to do, but a few sessions at a SALT group won't do him any harm I suppose (he has also had private SALT for nine months without much effect, but she is not an ASD expert).

Sorry for the long post. This is something very dear to my heart and occupying my brain at the moment!