ABA therapy, have you tried it for your child with ASD? Need advice ASAP please x

[Toni27]

Hi our son is 3, 4 in march. He was diagnosed with asd in dec 2012. He can talk, as in he can name objects and ask for things he wants. He repeats dialogues from tv almost constantly. He does not really respond to what others are saying to him, normally does not acknowledge he is being spoken to.
I asked his senco about trying Aba therapy on Monday as we want to do everything we can to try and help him ASAP. She completely advised against this as she said it is very intense therapy, we will be living from a workstation for the rest of our sons life and also she doesn't believe any change would be good for our son. She said we would have to undo all the work everyone has done for our son - putting in visuals at nursery, getting him to sit down for an adult led activity for up to one minute at nursery.
However, I have had to collect my son from nursery today as his behaviour was too challenging for them today, he was being very unfocused, pulling out every single drawer of toys that he could, not doing as he was told, pouring sand over the other childrens heads, head butting the walls when he was told not to behave in this way.
I love our little boy so much and truly believe that with the right help he will be okay, if he could only get his understanding of language and his speech there would be a vast improvement in his life.
I'm scared that by seeking any private help outside of the "system" might have a negative affect on him getting a statement that we want, we are putting him into mainstream primary school and hoping to get one to one support at all times for him.
If you have experienced aba therapy PLEASE can you tell me your experience, good or bad. We will be prepared to go behind our senco's back and pay for our son to have aba therapy if we truly believe it is his best chance of learning to interact properly and with language. How often did your child have therapy, as in how many hours a week? Was it just at home or did they need to go not your child's nursery or school as well? Did it make a massive difference to your child?
I just can't help thinking that there must be more we can do for our son to help him. Thanks xx

sorry, meant @Scratchybaby , not scratchynose 😁

@brightstar1988

I think you misinterpreted my post. But I suspect your at the early stages of how you view Autism. Over time, you will begin to accept the Autism as part of your life. But your last post screams as if your treating ASD as if you can cure from it. You cannot. You can definitely mask but in certain situations, the Autism will come out again as you speak.

Not anywhere in my post did I say that Autism becomes worse with age or they get more behavioural. Communication skills become more complex as all children grow up, including learning how to self-regulate and the use of executive functioning skills. Particularly in teenage hood and hence the child has difficulties navigating social situations. I must say though, the more skills my DC gained, the more obvious his ASD became ifyswim. I work with mainly "high functioning" ASD children. Lovely communication and language skills but they still struggle to navigate social situations, planning, self-regulate, sex and relationships. Autism is a never ending journey, there is always something to tackle (believe me!).

If anything, if you want your child
To be as functioning as possible, make sure your son/daughter has age appropriate language skills by 5 years of age. After this age, and your child isn't reaching age appropriate language skills, we would class this as a Language Disorder as after this age it becomes increasingly difficult to learn language. Not impossible but So far, I've only met one child with ASD, who developed age appropriate language skills after this age. Also, work on communication/pragmatic skills (I would place this would even more importance). Often often I see ABA children have lots and lots of language but they cannot use that language to communicate,; they do not request; comment, initiate, negotiate, explain, protest. My most language disordered children, who have significant language difficulties but have fantastic communication skills. This is where I would place more importance than language.

Also, why stop at ABA? Why don't you do Music therapy, speech therapy, Occupational Therapy, Drama, Swimming. You have an even better chance of your child having a vast repertoire of functional communication skills when you incorporate these other therapies into your programme- not just ABA. Remember, ABA consultants/tutors are not trained in the development of communication and language development,

It's a shame you are against the EHCP process. Despite what other PPs have said about getting funding for their DC's, as did I and a chose the therapists for my DC including charities that can support parents obtaining EHCP, but you are going in this blind. It's a shame. Over time, you would realise. Right now your not in the right frame of mind.

I am not against progress and I push therapists to have high expectations of my DC's. But I have been on Mumsnet for many years and the SN board has helped me in so many ways. Without me taking in what other Mumsnetters have said my children would not have reached their maximum Potential. So I strongly advice you to read, sit back and take what we have all said rather than being quite dismissive about the whole thing.

scrathybaby there will still be someone responsible for the Area SENCO’s work even if the post itself is unfilled. Like I said previously, regardless of the ABA debate, it isn’t ABA or nothing. For a start you paid for ABA so could have equally paid for independent SALT or OT. I’m not saying you should have I am pointing out flaws in the statement it’s ABA or nothing.

to get more money to go to general improvements of the nursery

They did not! The staff training and sensory toys funded via early years inclusion funding were for DD’s benefit. It wasn’t the 1:1 support and therapies you wanted but they are rarely provided to the level you want without an EHCP.

I am nothing but sure the services provided with an EHCP will be as bad as the ones we have been offered

You don’t understand how an EHCP works, or that it can include ABA.

many improve it to the same level as their NT peers.

You can’t cure autism.

I think this post is screaming cultural differences. You folks in the UK have a certain view on autism that is 360 degrees away from the USA and several other countries. The goals of the therapy in such countries are different, as well as the therapies themselves. I never said autism can be cured, however, the correct early intervention program will provide the best chances for a child to achieve independence. I never said it is ABA or nothing. I got to know ABA out of my own research, because all the professionals suggested me to do NOTHING. So yes, if you only know ABA and the other option suggested by the professionals is to do nothing, in this scenario, it is actually ABA or nothing. Certainly swimming and music therapy are pleasant to the child and valid, but DD needs results, and I am getting them with ABA (Denver model), as other parents are too.

The nursery funding was for the benefit of DD AND all the other children in the nursery. You have to be extremely naive to read what I read in her report and still think she is getting any benefit out of it.

And I don’t think disagreeing with the view of the UK health service means not being in the right frame of mind. I have spoken to professionals in other countries, where systems and treatments are different and my view is validated and understood, and usually I am able to be in the same direction of the professionals I reached out to. I reiterate I do not agree the way the UK health service goes on about ASD. But then again, this is what socialized medicine is all about.

The UK is so backwards in the ASD topic that people think of ABA as something out of the stone age, and are not even familiar with the newer naturalistic implementations… Honestly, I feel like I am in the 70s…..

I also think this thread is screaming cultural differences. @brightstar1988 I totally share your frustration (I'm not originally from the UK either and I've considered many times leaving the UK so DS has some actual support) but I think we should also remember we're on a UK-based discussion board. Insulting British people with the term "socialized medicine" isn't going to win many friends.

That said, I'm just about at the end of my rope with the SEN and healthcare system in the UK too and often look at how I can leave. I love the idea of the NHS and the social care safety net and would gladly pay more tax to get it working, but after 12 years of Tories the health and care system is broken. They've achieved exactly what they wanted, which is to push anyone who can afford to pay for it towards private care and run public health care into the ground. But because they've done it by stealth, there's been no time for a "market" to develop to buy anything from. At least in the US it's acknowledged that you're a "customer" so there's plenty to buy. Here we seem stuck in a no-mans land of next to no publicly funded care, but no mature health care market to buy from, at least outside of London.

And because there's nothing out there, the little money that HAS been spent seems to have been spent on gatekeepers - endless meetings and mediation that is meant to manage and ideally lower parents expectations (I've worked on a quite few LA SEN support contracts across England and Wales - "managing parent expectations" is an actual deliverable in some contracts) That, I think, is why it feels like professionals you encounter don't believe in the merits of early intervention. I think they do - policymakers, practitioners and experts speak about it endlessly - but there's so little money going into it that their hands are just tied.

For me, I'm glad I chose to spend my money on my ABA consultant/de facto private SENCO. I'm not rich and can't throw around thousands of pounds on private assessments and therapies that may or may not be a good fit for DS. I know autism can't be "cured" and I don't want to cure him. He's an intelligent, affectionate, fascinating individual who simply deserves to be surrounded by people who understand the way he learns to help him grow - so he has all the tools he needs to do what he wants in life. ABA is only one tiny element of that journey but the help of our consultant has been a vital starting point for us.

endless meetings and mediation

No one is forced to actively partake in mediation. In fact advice is not to as it rarely works. You don’t have to take part in endless meetings either. I have achieved 2 excellent watertight EHCPs for DS’s without actively partaking in mediation or endless meetings.

the correct early intervention program will provide the best chances for a child to achieve independence.

No one has said otherwise, but ABA isn’t the only way of achieving this. Even if you do decide on ABA an EHCP can fund ABA. Unless you are rich and money is no object the EHCP can fund provision well in excess of what parents can fund. DS1’s EHCP costs well over £100k pa. I think you misunderstand the support available within the UK. Things like SALT and OT are educational needs and should be in section F of the EHCP therefore ultimately the LA’s responsibility, not the NHS’s.

I never said it is ABA or nothing.

Yes you did, you said “What would be the other option? Do nothing and see where it goes?” Doing nothing isn’t the only alternative. You sought out and funded ABA you could have equally sought out and funded SALT, OT… Again, I’m not saying you should have, but it is an option and to say the only other option is “doing nothing” is ridiculous.


The nursery funding was for the benefit of DD AND all the other children in the nursery. You have to be extremely naive to read what I read in her report and still think she is getting any benefit out of it.

Ah so now you do recognise it wasn’t for the benefit of staff. Interesting. Training and sensory toys will benefit DD.


I am able to be in the same direction of the professionals I reached out to.

Of course you do, you have chosen who you approach! You aren’t going to approach professionals you judgementally see as having views that you incorrectly think are “out of the stone age”

The views on autism in the UK and USA aren’t as far apart as you make out. Nor is the provision. If the USA is so much better at ASD how come the outcomes are just as poor? How come some parents still spend large amounts of money on legal proceedings to force provision?

Might be worth adding here that a hell of a lot of autistic adults think ABA is pointless at best and usually damaging.

I don't think the UK is backward when it comes to ABA. I do believe their are some
Individuals who liken ABA to how it was back then. But I am aware of the natural approaches through ABA and VBA. But my point still stands that ABA treats communication like it is a behaviour and they are not trained in communication or speech and language development. Which is why it is key to get a very good tutor, who is willing to be flexible and not be too regimented when it comes to ABA.

I'm unsure why you would stop at ABA? I think this is one of your biggest mistakes. What about Occupational Therapy, Sensory Integration, Music Therapy. Autism is a multifactorial condition, targeting multiple areas would further enhance progress.

I don't think anyone on this board is saying the NHS is great. We don't even use the NHS for DS's therapies. We have hired private Therapist's with provision is funding by the LA. I don't engage in meetings. 1 or two is fine. But more than that is just time wasting. The LA don't like me as I don't have time for diddle daddling.

SusiePevensie
I think many people base their views on ABA on a very outdated model from the 60's and 70's.

Not in UK (Europe) but we did use an ABA provider for about 6 months with our DD (2-3yo at the time). This included the therapist joining her at nursery for a morning a week and we also had parent training. I think the one on one support at nursery was nice to have but when that therapist moved on from the company we decided to stop it.

The main 'behaviour' they tried to target was her climbing - partly because of the escape risk / danger I guess. However it is really clear to me now that DD really needs that climbing for her sensory regulation. So I think that the care plan failed to understand that and in hindsight I don't feel good about them trying to 'correct' that. That said, I don't agree with all criticism of ABA and it seems to actually have a lot of overlap with other therapies we have encountered (floor play, the Hanen more than words method, etc) - I guess all of it is focused on trying to build and encourage interaction.

I was an ABA fanatic, until I realised my son was doing 'great' when asked to do things ONLY because he was getting the reinforcement. Eventually it got tiring that he wasnt gaining natural interest in playing+socialising. Removing reinforcement and were kind of back to square one. We went back to salt, its takes longer, but eventualy he found playing fun. It was wayy slower. Bt he began to increase his interests through fun salt sessions. Took mamy sessions. In the uk you only get 4 sessions. Thats not fair. We funded 2 salt sessions weekly. Its taken a few years. His play and social skills have improved without needing to give reinforcement. It all became natural, not work. ABA is focussed on doing many hours. If you offer a child mamy hours of salt u will see good results too. My son had literally no interest in playing. He would just take a toy and try to eat it or rip it. Aba showed him how to play with toys....but he never gained natural interest and therefore never gained cognitively. Just reenacted what i showed him. Salt eventually got him to a place where hes naturally interested in playing.

Americans are obsessed with aba necause americans are definitely more prone to trying out and falling for anything that can fix autism. Were more pragmatic in the uk.
Aba helps with behaviours though. Sometimes you just gota give them reinforcement to get them to change, wash, clean, that sort of stuff. But any actual learning....it wont do the trick

In the uk you only get 4 sessions.

SALT is available via an EHCP (or IDP, CSP or statement of SEN in Wales, Scotland and NI) in excess of what would otherwise typically be available via the NHS (which isn’t 4 sessions everywhere). DS1&3 have weekly direct SALT provision.