Approx cost of ABA therapy?

[MumOfTwinsWorriedSick]

I posted recently about my 14 month old twins and concerns that they may be ASD. I know they're very young, but I am desperate to give them the best chance possible and am lucky to have some money in savings. I have read that ABA is the best therapy, but am struggling to find information on how to get it and how much it is likely to cost. Has anyone got any advice on how I can find a good provider, and what sort of cost it might be? Bearing in mind it will be x2... Really hoping I have enough to fund it but perhaps I'm being optimistic.

[Jackparlabane]

I don't know much about ABA other than many people consider it abusive as it appears to focus on suppressing autistic behaviours rather than teaching lagging skills. It may be applied in different ways but that would be my first concern.

I have three autistic kids and most help tends to be 50-100 quid an hour. We've used occupational therapy and a load of speech and language therapy and Emotional and Social Literacy 1:1.

I would get the ball rolling on EHCPs and DLA now, concentrating on a good school placement, and acquire extra therapy to deal with whatever the individual needs of your individual kids are. And good luck.

[MumOfTwinsWorriedSick]

That's good to know @Jackparlabane thank you. The Health Visitor and Local Authority aren't interested yet, they just say to "give them time"... Whilst I appreciate that they are very young, I have a horrible feeling I'll be hearing that for probably the next year while I could be doing something to help them. I just don't know where to start really, I feel completely on my own.

[Jackparlabane]

What about the GP and their nursery? I found that as soon as other professionals contacted the GP and LA also requesting assessments, things moved faster. If you're concerned I'd personally chuck money at a private speech and language therapist assessment as they're best qualified to tell the difference between 'just give them time' issues and 'actually there's signs of communication problems here'.
Going to nursery and dealing with other kids and adults may also make any issues more apparent that are masked when it's just you and both of them (and give them role models to copy).

Get good at record keeping and nagging every professional you can. With no.2 I ended up going to an occ therapist dropin not because he had much in the way of OT needs age 4, but because his ASD referral from the paed had been rejected and I didn't know what to do. Handily, he staged the most epic meltdown of his life, and their report to the ASD team (basically, mum is not exaggerating at all!) led to diagnosis. Not that a diagnosis is needed for a EHCP...

[MumOfTwinsWorriedSick]

They don't go to nursery at the moment, it would cost substantially more than I used to earn before I had them :(
I did think about using some of the savings to pay for that and go back to work part time. It's not what I wanted, but I don't feel I can meet their needs on my own now they are falling behind.

I had a chat with someone from ICAN when they turned 12 months, and the SALT I spoke to wasn't particularly concerned at that point. I got a good feel from them though (if that makes sense) and thought that if it came to going private, I might go with them. Do you have any experience of their services?

Thanks again for the advice and information, I really appreciate it.

[boobybum]

Good ABA is definitely NOT about suppressing autistic behaviours. It’s about finding a way that works to teach your child. You would need a consultant who would design and oversee the whole program and then either you or tutors would actually implement the program. You can find a consultant on the BCBA website and bear in mind that many of them travel so don’t put off if you can’t find one that’s local.

I would recommend you look at the ABA4ALL Facebook group and I think there is also an ABA Yahoo group.

A good introduction to ABA is a book by Robert Schramm called ‘Motivation and Reinforcement’.

As for prices - you’re probably looking at between £50-£100 per hour consultant time and tutors cost between £10-£15 per hour although this varies depending on where you are and the experience of the tutor. You would probably only have a few hours per month with the consultant and it would be you/tutors that do the actual work.

As your children are still very young you may not want to do anything formal as such but you can definitely use ABA principles in your everyday life.

[LightTripper]

I'll say up front that I have mixed feelings about ABA and I think it's easy to go wrong (though also: we all use ABA in our daily lives - every time we use a Fitbit or promise ourselves a coffee when we've finished the cleaning - so it's also easy to demonise). The history of ABA is pretty horrible so obviously creates a lot of fear and concern. So if you do go that route it's worth reading up about the concerns so you know what to watch out for and avoid.

But having said that early on when we were feeling really lost we did distance ABA and found it very helpful. Really it was a hand hold and they suggested lots of different parenting techniques - it wasn't purely ABA focused. E.g. we did a lot of modelling, co-regulating, backward chaining, breaking tasks into small steps, talking about feelings/how to process emotions that was really helpful but not about behavioural modification at all. We also did some more "ABA-ish" things like sticker charts, which I think were sometimes useful though they weren't motivating for very long (actually we found the same with our NT son: sticker charts worked for a few months around 2.5-3 years old and then were completely boring and non-motivating!)

We used a company called Beam ABA and did two calls a month with the tutor (so after their initial session with DD they weren't hands on with her at all, we were doing all the "therapy"). Financially that was much more manageable. I've checked the package we did and it's now £250/month, so not cheap still, but much less than having therapists in your house. I also felt much safer doing it myself and being in full control of the process. We did it for a couple of years (maybe from around age 3 to 5?) By the end we were sort of tutoring ourselves (we'd come to the calls with a list of ideas/suggestions and the tutor would say "that sounds good" :) ). We probably could have skipped the last year without missing anything much, but we really appreciated the hand holding while we were doing the transition to school and while we got into new routines.

It is very early days though, and I do think the most valuable thing you can do is just play with them and follow their lead on what they seem interested in (even if that's something "autistic-seeming" like spinning or pouring or whatever). The point is that it still teaches your children that interacting with you is fun and valuable if you can help them to do what they are already motivated to do.

There is a great Facebook group called "Nurturing Neurodiversity" that you might like. A lot of parents there are still pre-diagnosis and will know how hard that limbo stage is. The lady who runs it also has some good videos on YouTube. Here is an example one, talking about things you can do that aren't "therapy" (but could be run alongside speech therapy or occupational therapy or anything else you might choose to do).

She has a bunch of different videos that might be useful later too. A mix of very practical subjects and the more emotional side of things.

It's also worth checking your local diagnostic pathway (i.e. how you would get an autism diagnosis later if it turns out that is what's going on), just so you can make sure you are in the right process as soon as possible. There may also be services (e.g. Portage) that you can access pre-diagnosis. If you Google your local authority name and "Local Offer" you should find a page with lots of information on special needs services, local support groups, etc. Some of it will be restricted to children who already have a diagnosis, but hopefully some of it will be available without a diagnosis too - and it should also give you some idea of how the diagnostic pathway works in your area. For example, here is a leaflet that shows how it works in my area: but annoyingly every area is different (might give you some ideas of search terms to try to find information for your area though!): cityandhackneycamhs.org.uk/wp-content/uploads/2015/10/ASD-assessment-leaflet-2016-pdf.pdf

As previous posters said, having an outside professional on your side can really help, so even some very part-time nursery might have value if the nursery could then help explain and validate your concerns. It was childcare who first picked up our DD's issues, and when she was formally assessed at nearly 4 a visit to her at her nursery (and talking to her nursery teachers) was an important part of the assessment. She also loved nursery and I think it made the transition to school much easier for her when the time came (but obviously you'll get your funded hours well before that, so no rush if finances won't allow it).

It's tricky - because in terms of best use of funds, you may find that topping up nursery costs when they're a bit older is actually more "bang for your buck" than throwing money at therapists now. But I remember very well how horrible this stage of having concerns but not really knowing what to do about them is, so I know the temptation to do "anything available" is very strong!

[MumOfTwinsWorriedSick]

Thanks so much for these really helpful and detailed replies, I really appreciate it.

I think the "easy to go wrong" part of it all is what scares me, I just feel so out of my depth. I feel like I will end up wasting the money on something that may not even help, or at worst could be damaging. I don't trust myself to lead any therapy either, I feel that it would be way beyond my capabilities :(

I too have been thinking that the best thing might be to use the money for nursery, as that would probably open up the most doors, as well as remove some of the pressure from me and allow more experienced people to observe my girls' behaviour. Plus they'd get so much more interaction and stimulation than I can provide at home all the time.

I will check out the Facebook group and the Youtube videos too. Thanks again for taking so much time to reply, I really am so grateful.

[LightTripper]

Also do bear in mind it might not be autism. I have a friend who was really worried about her second child. He was really unresponsive as a baby, cried a lot, and didn't sleep well. It turned out he had some kind of gastric issue - some valve was late to close up properly or something. Anyway, he just suddenly cheered up at some point between 1 and 2 years old and started interacting much more. He's now about 6 or 7 and completely neurotypical as far as I can tell.

I'm not saying it is or isn't Autism- just that when they are so young it's really hard to tell what's going on. Definitely worth reading up on autism and encouraging interactions in case it is ASC but also don't make assumptions. Financially I suspect it may be worth "keeping your powder dry" until you've got a better idea what is going on and where the money might best be spent.

One thing that might be worth looking into in your Local Offer is if your local children's services offer any kind of "stay and play" events? I remember taking DS to one when we were worried about his speech. It was a big room with toys and they had a few SLTs present and you could drop in and get put on a list and get a short appointment with them (just 10 or 15 minutes I think). Something like that could give you some good pointers, and if they had concerns would put you on their radar? But every area is different in what they offer.

Here is the service where I live: again may just be worth Googling where you are and see if there is anything similar (or ask your HV but they are not always totally clued up). I find these things are often not well advertised so it's hard to know they exist unless you know where to look!

gethackneytalking.co.uk/healthcare-professionals/tiwi-dates/

He turned out not to be autistic but it was really reassuring and good to get their advice on what to look out for (DD is autistic but hadn't been speech delayed at all, so when DS then was a bit speech delayed I kind of assumed it was autism - but turned out he was just a bit behind). Probably because he had a big sister entertaining him/doing things for him without him having to say anything!

[MumOfTwinsWorriedSick]

Thank you @LightTripper. I've had a look at the "local offer" page and unfortunately ours is rubbish, it's just a list of literally a couple of thousand organisations including every day nursery in the county! Basically the contact details for anything remotely to do with children You can even add details of your own business and it says that the council does not necessarily endorse any of the services listed
I will wade through it though and see if I can find anything that's actually relevant, though it doesn't bode well for what our LA might be like in relation to SEN... It's a shame, as that drop-in event you described sounds brilliant.

I am trying to keep in mind that it might not be ASD. I do have a tendency to panic and jump to conclusions. Yesterday the twins had a really good day, one even started bringing me things which is new. I've just had a gut feeling that something is wrong since they were tiny, their eye contact has always been very poor even though they're very happy babies. I've often felt like I'm invisible to them. There is still time I suppose

[LightTripper]

If you watch some of the Nurturing Neurodiversity videos, Faye talks about how hard she found it when Dexter was little and didn't want to show her his world - but today he really does and it's lovely to see. You'll get there regardless of whether they are autistic or not!

Sorry your Local Offer is rubbish. I do think we're lucky here that the services are pretty good. Maybe see if your HV has details of any local children's centres that have any kind of stay and play? Even if there's no professional SLT or OT input, there will be workers there with experience of watching children play and you'll be able to get some ideas from them about how to help your two to interact more, and in time whether they think part time nursery might be helpful, or whether they could help with a referral to formal services.

If you wanted to PM me what county you are in, I'm happy to do some digging for you to see if I can turn anything up - I have some free time at the moment (as you can probably tell from my over-long replies ).

[MumOfTwinsWorriedSick]

@LightTripper you are so lovely, thank you so much. I've been watching the videos and to be honest, I am now absolutely sure my girls are on the spectrum. In a couple of the videos Faye mentions the earliest signs and also the strengths Dexter had which made her doubt ASD. Absolutely everything she said described my girls, and I now realise that I shouldn't be too reassured by some of the things they are doing. However you are right, her videos are very positive to watch. She seems like such a lovely lady too.

Luckily I have been in touch with a new Health Visitor who seems much more on the ball, so I'm hoping that at least we will have some input from services soon. She's visiting us on Monday so will have to see what happens.

Thanks again for all of your advice and kind words, I am so grateful.

[LightTripper]

Best of luck! Sorry you've had a difficult realisation, but good that the new HV seems more promising. Will be thinking of you on Monday. Let us know how it goes?

[MumOfTwinsWorriedSick]

Thanks @LightTripper. The HV was wonderful and she spent 2 hours at my house! She did the ASQ and the twins did great in every area apart from communication where they were in the black. She then did the extended social & emotional ASQ which they "passed" by a hair, literally just a couple of points off the cutoff of 48. She could totally see what I mean about how they act as though I'm invisible.

She said that even if she referred us to the paediatrician then it would be rejected at the moment, on the basis of their scores. She is going to visit every month to keep tabs on things. Feeling very mixed tonight but thankful to have input from someone who seems to genuinely care, which is a good start.

[LightTripper]

That sounds really good!

The thing to remember/bear in mind is that (sadly) nothing radically changes if they do get a diagnosis (and usually they are reluctant to diagnose until a bit later as there is so much natural variation at this age). It's still mainly up to you and their normal child care/school settings post-Dx (and some supports are available pre-diagnosis anyway). So don't get too hung on on Dx either way (easier said than done I know!) Whether they are autistic or not they will change and develop so much between now and then. We were always so amazed that the things we worried about changed so much all the time. It's actually worth having a notebook or folder where you write down your observations. It's very useful later if you do go down the diagnosis route (as will be the HV notes), plus it's just encouraging that you can see that even if they are on a different developmental path they are still developing and learning new skills!

Great to have a supportive HV "on your team" too!!

[R0098]

Hi @MumOfTwinsWorriedSick

Just wanted to put in a good word about ABA because I know it’s very controversial. My daughter who is 2.5 has made good progress within the first three months of starting, I’m really impressed with it. We see her therapists about 3 times a week and they are very caring and do not do anything that distresses her, I’d say she actually has a lot of fun in the sessions!
I think 14 is quite early though - I believe about age 2 is a good age to start and that’s considered quite early in this country.
Our program costs approx £1200 per month, so pretty extortionate! But hopefully we will get it funded eventually if we can prove it’s helping dd.
Hope this helps.

[LongTallSal]

@R0098 what were your daughter’s specific challenges and how did they improve of that okay to ask?

[R0098]

@LongTallSal some examples are - my Dd is not good at following instructions from adults. ABA has so far helped her be able to sit down for meal times much better, and often she expands her messy play to the whole living room so we’ve managed to get that a lot more contained! It’s also increased her use of verbal requests, she is now approaching other kids at nursery to play with them and is much more interested in them.
Other instructions she is also showing more understanding of too.
We are early days in her ABA program but I’m pleased with the progress she’s made so far.

[LongTallSal]

@R0098 thanks, I was wondering if ABA could help with socialising / interest with peers and it looks as though that has worked with your dd.
I wonder if I could ask what your dd main symptoms were that got you to seek a diagnosis?
My dd 24 months isn’t diagnosed but she was late to point and name response not good but she seems to have caught up with that now and her joint attention, receptive language is ace and knows about 150 words and started to do 2 word sentences recently so I did relax for about a week before I realised she had a precious ability to read and, I hadn’t really noticed or maybe I was kidding myself but, she doesn’t follow a point so I’m back to anxiety land again and think it is likely she will get an asd diagnosis given the (resolved) delays and new issues. I don’t see her interaction with other children unless literally passing by in the street but she does not seem overly interested when they walk past but hard to judge that element on so little.

[R0098]

Hi @LongTallSal sounds your your dd is doing great whether she gets an asd diagnosis or not
My dd’s language was just not developing on track which lead to me looking into ASS. She started to say some words around 12 months but the language just wasn’t building up like her peers and she is not conversational at all, even though she can now say loads of things, she can’t answer questions. She didn’t point until she was over 2, even now it’s fleeting, she doesn’t wave consistently, only sometimes. She takes us by the hand to get what she wants which is typical asd, quite sensory seeking where she can’t really concentrate too well if we are somewhere like the supermarket. Her receptive language is improving hugely but compared to her neurotypical peers is still behind.
I think with peer interaction, it’s definitely difficult to tell from walking past kids on the street - does your dd go to nursery or have you seen her at any play dates?
In ABA they try and show my dd that playing with her peers can be fun, where as before she ignored the other kids completely and would only be interested in the adults.

[Mum012]

Is that 1200 pounds for 3 hours. How long are the sessions please?

[R0098]

@Mum012 that’s per month for about 3 sessions per week. The sessions are around 2-2.5 hours each.

[Mum0123]

Many thanks for your reply. Can u please tell me who is your provider. I really want to start ABA as soon as possible and still looking around. Are u using a consultant and tutor?

[R0098]

@Mum0123

Many thanks for your reply. Can u please tell me who is your provider. I really want to start ABA as soon as possible and still looking around. Are u using a consultant and tutor?

We use one who is very local to my area. We firstly found a consultant and then she introduced us to a supervisor she works with on other programs and then same for the tutor. What area are you looking?

[Mum012]

I live in Basingstoke. The reason why I am asking you is because all other packages are way too expensive and either 15 hours or 30 hours. I also think it might be a lot for my son. He will soon be 3.
Are you happy with your hours ? Do you think it is enough?
I really appreciate your help but I am so lost at the moment.

[Mum012]

I live in Basingstoke. The reason why I am asking you is because all other packages are way too expensive and either 15 hours or 30 hours. I also think it might be a lot for my son. He will soon be 3.
Are you happy with your hours ? Do you think it is enough?
I really appreciate your help but I am so lost at the moment