Advice on ABA please

[Soutty]

Hi

I'm new to Mumsnet and this is the first time I've posted on this board.

My DS has just turned 4. I have had concerns about him since last year as his speech is very delayed and his social communication is poor in other ways too. Left to his own devices he would count (he can count to well over 100) add, spell and recite the alphabet most of the time.

He is being assessed and all reports point out his speech delay, poor eye contact, occasional hand flapping, extreme precociousness in some areas (reading labels, counting) and other symptoms which indicate some form of ASD.

A year has gone by and all I have been offered is a workshop which frankly stated the obvious. It may have been of help to the parents of a child who had speech delay due to being plonked in front of the tv all day long but was otherwise of little use.

They say he has met all targets so far but he is still way behind the average 4 year old, speaking in 3-4 word sentences most of the time and if he can get what he wants by saying less he will. He doesn't seem to understand the ping pong nature of conversation at all.

I have been reading a lot about ABA and it's given me some hope. I am trying to learn about the techniques but if possible I want to get him on a programme. Does anyone know how to go about this in the UK and how much it costs. Does it have to be 40 hours a week? Has anyone had success by doing it themselves? The problem is that I work 3 days a week. On those days he attends pre-school which he copes with and enjoys and I'm sure it's helped him along a bit but I really feel that he needs one to one attention.

Does the council have a duty to provide speech therapy before he gets a diagnosis? Money is tight but I am prepared to make sacrifices to ensure he gets as much help as I can afford - still though I want to make sure that he is getting all that he is entitled to.

Sorry this is so long but I am really at sea with all this - I've only just come to terms with the fact that he probably has ASD and I'm feeling pretty alone and scared about the future.

Thanks in advance.

Here is a blog I wrote about my earliest experiences of ABa, which was the first thing that gave me real hope of improvements in my autistic boy (I , like you, had just been offered a few desultory workshops).

You can do a lot yourself, but would probably need a supervisor or consultant to get the ball rolling (try ABAtutorfinder website).

Council will only pay (possibly) once you prove ABA can get results, so keep meticulous records of all progress. Good luck!

autismandabamum.wordpress.com/2011/06/29/how-my-autistic-boy-learned-to-talk-via-aba/

Thank you sickofsocalledexperts (love your username!). I would love to read your blog but unfortunately the link doesn't work.

autismandabamum.wordpress.com

If you put that into google, it should pop up.

Here are my (very basic) first steps to starting ABA. I've written it fairly quickly while looking after kids, so excuse me if it's got mistakes in it or if other ABA mums think I've made it too simplified, but hope it helps:

a) read the book "Let me hear your voice" - you hopefully will find it motivational and it will give you the impetus to get going

b) Find a supervisor or a consultant or a tutor - either via word-of-mouth from another autism mum, PEACH, ABA-UK Yahoo group or ABAtutorfinder.

c) Invite them round for an interview. Technically you need a consultant on top of the program (£90 an hour); a supervisor for day to day management (c. £35 an hour) and then tutor(S) - £15ish an hour. But there are so few tutors around that I would grab whatever you find, in whatever combination

d) don't worry about doing 40 hours a week or anything like that. Whatever ABA you can do is better than none, as it starts to improve the child's antisocial behaviours (which get in the way of learning) and to improve their speech/social abilities

e) Take up references from other mums on the tutors you choose, they will be honest

f) Once you have recruited, using whatever money you can scrimp, beg borrow or steal from relatives etc, sit down with tutor and set top 5 things you want worked on (eg mine were speech and aggression), Make sure the tutors know how to motivate your child (eg via a particular toy/sweet/outing). Motivation is key

g) Get going, stay around for the first few sessions to make sure you are comfortable, then gradually fade yourself off the scene

h) Use the time for a break for you, eg a coffee or a swim or whatever

i) Try not to interfere too much. The child will find it difficult at first and may object, as their life thus far has been free of any "work" or constraints. Of course they will moan when someone comes in and dictates the pace, as they have previously followed exclusively their 'own agenda'. Keep thinking - how will this behaviour look , if not tackled, when he is a strapping man of 19?

j) Have regular meetings and updates with ABA team, to refine targets. Make sure you are consistent at home with what they are doing - nothing will work if it's just for 3 hours a day, and then family undoes all the good work the other 9 hours of the day

K) make sure you and the tutors keep meticulous records of progress made, as this will form basis of your case to LA for funding or part-funding

l) Meanwhile, be applying for a statement using the diagnosis of autism

autismandabamum.wordpress.com/2011/06/29/how-my-autistic-boy-learned-to-talk-via-aba/

Like sickof my ds is less severe and more able to cope due to ABA. It may not work for everyone but don't pay any attention to the doomsayers who claim it never works for anyone. It's a great way to engage with and teach an ASD child

Thanks that's hugely helpful. I am definitely going down the route of ABA - visual timetables and makaton are doing nothing for him - as you say, it's the motivation to speak, social skills and odd behaviours that need to be worked on.

Agree. We've only just started but I see positive changes in him and us.

Yes, go for it soutty. DS is fairly 'mild' but our family was miserable before we discovered ABA. Even on two two hour sessions a week we started to see improvements.

Hi Soutty,
welcome to the board. We've been doing ABA for over a year with ds1 and during that time he has come on so much, I really can't recommend it enough. The charity Peach www.peach.org.uk are very helpful - you don't have to choose them as your provider but they still help you with advice on statementing process, finding tutors, finding families near you who do ABA, providing training for tutors and family members. Also, the ABA UK yahoo group is useful for meeting other families in the same situation. good luck

Hi just thought I would join in as Im about to start ABA for ds. We have the consultant coming tomorrow for the first time so quite excited about that especially as she is not only going to put a progrmme together for ds but also going to give us a good indication of whether she thinks ds is on the spectrum (still awaiting for a diagnosis from the NHS!) - my gut feeling is that he is so don't think I will be too shocked. Still looking for a tutor though. Just wanted to ask you ABA experts - do you think 2-3 hours a day 5 days a week is enough for this programme to make a difference - ds's main problem is that he doesn't talk and has listening and short attention issues? (Sorry to barge in to your conversation...LOL)

My son sounds very similar to yours although my son's speech is more limited. He is almost 5. We did ABA part-time for a year with just a supervisor and consultant and doing 15-20 hours a week ourselves. The rest of the time he went to mainstream nursery with SALT, outreach and 1:1 and as your child, did nothing other than the alphabet and counting.
We saw results really fast with ABA - he had regressed and lost all his functional speech and got single words back very quickly. Since then he has learnt new language slowly but steadily. Its very systematic and tackles all skills so we have worked on language, social skills, joint attention, imitation, reducing repetitive behaviours, breaking down lots of rituals, auditory memory, sequencing. All 1 step at a time. Taught this way he can learn for eg new language concepts in an afternoon which speech therapy and 1:1 in mainstream failed to teach in 9 months.
He is more social, more affectionate, more interested in the world, fewer tantrums, has more language, his concentration has improved. Much more tolerant of other children.
He has moderately severe autism but is bright.
He has never had a visual timetable - does not need one he can understand enough speech and doesn't suffer from anxiety about whats going to happen next.
I can't understand why a child more verbal than mine is using makaton. DS has never done makaton or PECS we just use speech and sometimes written prompts as he likes to read words. My DS is reluctant to talk - will use one word if he can get away with it - so we do a lot of work on motivating him to talk.
My DS has just gone into mainstream reception for 3 half days and has ABA support in school and that works well. The rest of his programme is at home.
We went to tribunal to get ABA funded and won a fulltime programme a year ago based on the evidence between what we achieved at home and what the LA approach was not achieving in nursery.

You can do a part-time programme quite cheaply and if you can get ABA into nursery / school and get the staff there trained in ABA that will dramatically bump up the hours but LA funded schools and nurseries are often reluctant as LAs put pressure on them not to allow ABA (because they don't want to end up funding it). Just be doing some yourself you change the way you parent and that helps massively.

Most children for whom ABA works show progress within the first 3 months so you can do it for 3-6 months and then decide.

If you can get a statement with ABA before you have to go into school then that is useful as you don't face the same problems getting schools to agree to ABA if its already been agreed / ordered by a tribunal.

Thank you so much everyone for your replies. I am a bit scared by the £30,000 a year though. We just can't do that - our plan was to change our mortgage to interest only for 5 years thus freeing up £1k a month. We just couldn't find double that amount. However anything must be better than nothing, even if it's only 5 hours a week.

Sleepyhorse, please let me know how you get on with your consultant. Sounds like we are in a very similar boat as our boys have not been diagnosed yet.

£1000 a month is enough to do a 5-10 hour programme with tutors + some hours yourself and include supervisor / consultant. You can use family, friends or psychology students as tutors who may be free / cheap. You can use direct payments for tutors or DLA. Claim everything.
We paid a supervisor £400 a month for 12 hours we felt that the supervision was the crucial part.
We also had no tutors to start with and then got one for 5 hours when we started to burn out.
You might want to use some of the money for an indep EP report / advocate for tribunal so cost that in.
We spent £10-11k for a parttime prog for a year including EP+legal help at tribunal and won 35 hour programme at tribunal. So def possible on £1000 a month
Forgot to say Cerebra (charity) has a voucher scheme for speech therapy if you are stuck on a waiting list you can get £500 for private SALT

I'm beginning to see that there's no reason a parent can't do it but it does help to have more than just parents for generalisation purposes. It's the consultants that cost a bomb and unfortunately I think you would need one at first anyway. Depends on your circumstances.

I live in Kent Electra so if your supervisor is based in the South East then I'd love to have her details.

I don't know whether he would be classed as high functioning or not but he does have a fair few skills eg he is toilet trained (though still has accidents sometimes), can take clothes off, helps put them on, can hold a pen, use a fork and so on. There is a lot of work to do but I would hope to see results in 15-20 hours a week.

I tried to join Peach and they took my money but for some reason it hasn't worked. I've emailed them and I'm waiting to hear back.

Peach programmes usually insist on 40 hours, or did when we approached them a few years ago.
We use these who have staff in SE and they let us just buy in supervisor time.
I mean they will say what they think your child needs, but if you cannot afford it they will fit round what you can afford as long as they think thats viable.

I just wanted to agree that you don't need a full-time programme by any means. There's no denying the more hours the better, but for ds1's first 6 months he had 12 hours therapy a week and made huge gains. So much so that after those 6 months the LEA agreed to fund him for 20, and later 27 hours a week.

He is not 'mild', whatever that means, he started with no language at all (expressive or receptive) but even with those 12 hours he was a very different boy before long.

Also remember that old chestnut, it's quality not quantity. I know people who had 30-40 hour a week programmes and their kids weren't making the progress my son was in nearly half that. That's because their consultant and/ or supervisor wasn't involved enough and the team wasn't cohesive and 'tight' in the way they were working. Therapists have their own styles, and that's a good thing, but they still need to be on exactly the same page re targets etc.

In short, I would have taken 12 hours a week with my best ever therapist over 30 hours a week with my worst any day

How do you find a good therapist? Is it just a case of trial and error?