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

Great-look forward to meeting you!
I hope you will manage to make it out with the posse from our end for dinner one night?
I will be presenting too.

I am so happy to read this post. Even though its a few years old. I was finding it hard ti ger real reviews from families. I have an autistic 3 year old, we got diagnosed in the summer and since then its the odd SLT here and then, nursery just literally keep him happy and he has independence there but he's not learning anything. He has a twin and we arw working full time with kids in the background. I have no idea what to do so this thread gives me home i will finally be able to communicate with my son. Thank you!!

@MinnieB83 my DS is 3, doesn't have a diagnosis yet but I suspect it will come. We've been doing ABA at home with him for about 4 months and have seen a leap in developmental milestones - including hearing his gorgeous little voice! Can't recommend it enough - good luck with your next steps x

Thanks so micj. I will keep you posted

Old thread but really helped me. We currently do an at home ABA program with DD (2.4 years old) since 6 months. I would like to start by saying that since starting the program DD has progressed exponentially! Her attention skills are much better, she can request basic things and started saying words. Through the whole ordeal, SALT and Paed tried to put us off ABA, with the excuse that it is traumatizing to the child. They said if needed later, she can get an EHCP or go to a special school.

Our experience has been far from traumatizing, DD loves when we do sessions and I apply the principles of ABA throughout our daily routine. Nobody in the system has even spoke. to us about the importance of early intervention therapies, we had to find it ourselves.

I am confident this is the best for DD. What would be the other option? Do nothing and see where it goes? Risking her never acquiring basic skills that will get her through school and life? Ending up in a special school? Certainly people’s brains are wired differently, however, the low expectations that the system has on autistic children is mind cruel. This approach works for the system, keeps everyone employed and lowers the costs of care, however it is not the best for the CHILD. Some children are really terrible in maths for example, need help and support, but does anyone give up on them? No, they learn basic maths to get them through life and school. Probably won’t want to be engineers, but at least they get the chance to improve before being labelled “mentally disabled”. I believe with autistic kids should be the same. Identify ASD early, provide necessary interventions immediately and only AFTER interventions are provided make a more definitive prognostic. If interventions fail, THEN provide them with special provisions, schools, etc.

I also would like to highlight, especially to parents who have just started familiarizing themselves with ASD, that an ASD diagnosis through the NHS will not make it easier for your child to get supporting therapies, especially because the system does not believe in targeted ASD therapy. On the other hand, I beg you to PLEASE research the future limitations your child will have with an ASD diagnosis through the NHS. This diagnosis is for life, no matter how early it has been done and whether the child is able to function at a high level as an adult. If they decide to pursue a career in the Army, for example, an ASD diagnosis might hinder them. If they travel abroad, they might have issues with insurance. So please think of what really is traumatizing to your child.

Hi there, could someone explain what ABA therapy is? I have no idea and this is all totally new to me. Do I learn it myself? Is there any funding for it or how do I go about getting it for my child? Is it expensive? What is the best way to go about it? I'd really appreciate any advise? many thanks x

What would be the other option? Do nothing and see where it goes?

Regardless of anyone’s thoughts on ABA, you do realise there are other options between ABA and doing nothing, don’t you?

You see an EHCP as a negative, but it isn’t. It is a means to secure support for your child, including ABA if you want to go down that route.

A diagnosis isn’t a label, and it doesn’t mean one is “mentally disabled”. A label in and of itself doesn’t make any judgement about prognosis. I don’t don’t why anyone would want their DC to fail before receiving a diagnosis. Neither does a diagnosis have to prevent a person joining the military, nor travel.

With regards to the military, please refer to the following official UK Parliament website:

questions-statements.parliament.uk/written-questions/detail/2014-10-15/210642

Quoting: “Whilst those diagnosed with autism are excluded from joining the Services on medical grounds, those individuals suffering mild or entirely non-disabling Asperger’s Syndrome may meet the entry standards following an assessment by an occupational health physician and gaining a favourable assessment after pre-entry tests of suitability for military service.”

Indeed, there are other types of intervention that do not use ABA principles. Our DD is progressing with ABA, other child might progress well with other therapies. Key words are: high intensity early intervention, regardless of official diagnosis, which is a consensus between the majority of professionals outside the UK, supported by evidence based practice. This is not promoted by the NHS. Instead they do have a “wait and see approach”, as was suggested to us by all professionals she has seen. Early intervention was never mentioned to us.

With regards to the EHCP, if it is necessary after early intervention therapies, then indeed it is a great thing. However I believe every child has the right to be given the chance for improvement through implementation of suitable early years therapies. The EHCP should be seen as further support needed after early interventions were not sufficient, not as an intervention itself. The EHCP is not a solution.

That government statement is from 2014 and no longer up to date. As you can see from this Royal Navy medical eligibility guidance autism isn’t an automatic barrier to signing up to the military. It states Candidates with Autistic spectrum disorder will be considered on a case by case basis.

An EHCP is a means to achieving the early intervention and therapies you discuss, including ABA. The EHCP in and of itself isn’t the ‘solution’ but the SEP within it is. Solution as in what provision is required not as in a cure, because one can’t cure the difficulties caused by autism (whether the autism is diagnosed or not).

If you acknowledge there are other options between ABA and doing nothing why did you post ”What would be the other option? Do nothing and see where it goes?“?

The parents here in this thread can read the JSP 950 - Medical Guidelines used for all military staff. This is updated guideline and classifies ASD as UNFIT, except in specific cases, such as mild Asperger. Please also search reports of military staff who were already working for years and were dismissed as unfit after an ASD diagnosis in adulthood. It is all available information. If anyone is interested I can send the links, I just don’t want to write a wall of text here.

An EHCP takes time to be done and considering the care model in the UK (wait and see) it is rare that a child will get any sort of suitable therapy through it, let alone ABA, let alone within the right timeframe. Let’s just be honest here.

I ask what the other option would be because upon enquiring the Paed about ABA (the only therapy I knew at the time) she put us off and didn’t guide us in terms of other therapies or early intervention. “Wait and see how she develops” was the advice.

I am not going to discuss anymore. The facts are there for any parent to research and any parent that has gone through an ASD diagnosis knows the system is a failure.

They can also search see the guidelines I linked to that are the updated criteria rather than based on out of date information and read stories of military personnel you don’t have Asperger syndrome and haven’t been dismissed. As I said, a diagnosis doesn’t have to be a barrier to joining the military. It is no longer an automatic barrier.

Many DC get suitable therapy via EHCPs. I have 2 DC who, among other things, receive SALT, OT, physiotherapy and MH therapies via their EHCPs. I know many other pupils who do too. An EHCP takes 20 weeks if parents don’t have to appeal.


Again, the choices aren’t ABA or nothing as you seem to think.

Sure, thatsnotmycar, the system is great and fit for the purpose of supporting ASD children. There is no discrimination at all and all support is provided. I am certainly misinformed.

I didn’t say there’s no discrimination or the system was perfect, but you carry on twisting my posts to fit your narrative. From your posts on MN you certainly are misinformed about EHCPs and what support they can bring as well as eligibility to join the military.

The only problem with ABA is that it is very very difficult to find a good tutor. Most of the children who I've seen who had ABA appear to be robotic. They have the language skills but they don't have the communication skills,. Communication if a difficult skill to teach as all communication is dynamic, it's not really a behaviour- in that you have to go through certain pre-requisites and then hopefully you reach the optimal status quo. To support communication skills, you have to be dynamic, presume competence (I.e. if a child does not follow a hierarchy of typical steps then there's no point teaching the next step), follow and capture their interests, explore communication methods, model behaviour outside, etc etc. Essentially, you want your children to be independent thinkers, not having to be promoted X amount of times.

I think ABA is great for Independent skills and if you have a child who has behavioural needs. But that's about it.

You can get therapies with an EHCP. One of my DC's has an EOTAS package, meaning that the LA funds his provision. So we chose our therapists, tutors and the LA funds this. This is impossible to get if you don't have an EHCP. I also have a friend who got ABA funded via through an EHCP and Tribunal.

@brightstar1988

I see your point about an ASD diagnosis being a hinderance and the low expectations of them in general. I do agree that there is low expectations of children with all disabilities but that is a societal issue.

In terms of schooling, if you want a school that does not typically take in ASD children, even if you know it's a great school and it can meet your DC needs, but you have a diagnosis- you are basically fucked. But the older your child gets, the most obvious the ASD becomes and it's important for children to know of their identity which is why I am pro diagnosis

A special school is not a bad thing though. A specialist school, (note the difference) which are mostly private schools, in house therapies and take a very select profile of children is way much better than mainstream or special schools on my opinion.

secular one of mine has an EOTAS package too.

To add to your point about schools, presumably you are talking about independent schools here. The child without a diagnosis still has all the same needs they would have if they had a diagnosis. and the school may well ask them to leave diagnosis or not. Some independent schools aren’t supportive of SEN, diagnosis or not.

I'm talking about independent specialist schools than independent mainstream schools. Often the indecent specialist schools require a diagnosis before entry, regardless of needs. For example, to get into a Dyslexia specialist school you need a diagnosis of Dyslexia. If you want a specialist ASD school, then you need an ASD diagnosis. Some schools which are a bit more general, I.e. speech, language and communication needs, do take children without a diagnosis but the primary need has to be speech and language.

Not all Independent special schools are great, including special schools, mainstream schools. You just have to look further wide and look at each school and see if it could meet needs and if your DC's fits into the school.

Yes an independent special school can ask you to leave. It is more difficult for them to do this though than, I presume, a private mainstream school, but the difference is that the process is much slower.

Oh yes, I agree about independent specialist schools often needing a diagnosis, but there are schools that don’t require an ASD diagnosis e.g. Breckenbrough and Alderwasley Hall.

How easy and quick it is for an independent SS to ask pupils to leave depends on whether it is wholly independent or a section 41 independent. The former is just as easy as an independent mainstream. The later is harder as the school can be named even if they object.

My point about independent schools was about mainstream independents where some parents avoid getting a diagnosis because they think the school will ask them to leave, but the school goes on to ask the pupil to leave anyway because all the same needs are there whether they have a diagnosis or not.

Thanks flor the feedback secular39. May I ask you two things? As I am not particularly seasoned with the UK educational system, do I understand correctly that in case a child has an ASD diagnosis it would be harder to get a place in a mainstream school? Why would this be?

On another topic, I understand you mentioned ASD symptoms and characteristics to become more obvious as time passes, would you not work with the possibility that they might decrease with therapy?

do I understand correctly that in case a child has an ASD diagnosis it would be harder to get a place in a mainstream school? Why would this be?

Where there’s no EHCP mainstream state schools cannot refuse to admit because a child has an ASD diagnosis. Places are allocated using the over-subscription criteria.

With an EHCP an LA can under limited circumstances refuse to name parental preference of a state mainstream school, but this isn’t based on diagnosis. A diagnosis in itself wouldn’t alter matters.

Independent mainstream schools sometimes refuse a place for pupils with SEN, but this is usually based on needs, not diagnosis.

On another topic, I understand you mentioned ASD symptoms and characteristics to become more obvious as time passes, would you not work with the possibility that they might decrease with therapy?

As the demands and expectations of life increase as children gets older typically ASD ‘symptoms’ become more prominent and DC who can mask are less able to do so.

While I can see the various points being made in this thread, I can totally recognise the frustration that @brightstar1988 is voicing and, at the age their DC is at, why ABA feels like the "only" option.

My DS is almost the exact same age and up to this point, our privately-sourced ABA consultant has been the ONLY source of useful information, across the board. Not just the ABA support, it's the whole package. In the absence of a useful SENCO (sometimes literally, the post is just vacant), our ABA consultant is the only one helping us navigate the range of ASD support options out there (including OT and SALT - she's great and encourages us to see ABA as only one approach that may not always be right for DS, depending on what he actually needs).

With the pitiful - and sometimes actively obstructive - "support" we've had during DS's time at nursery I'm not holding out a lot of hope for anything better when he starts school (though I know that's what an EHCP is supposed to help with, I've already joined enough local SEN parent forums to see how frustrated they are with their DCs' schools).

I think an angry howl of despair about how broken the SEN system is is totally valid. It's beyond shit and it's wasting the time and potential of so many amazing children out there. We're only told to "wait and see" because the people telling us this know they have no early intervention to offer us.

@Scratchybaby If the nursery’s internal SENCO post is unfilled there will still be someone with responsibility for SEN pupils, usually a member of SLT. There will also be an Area SENCO the nursery can request advice from. You also don’t need to wait until school age to apply for an EHCP.

There’s portage that provides early intervention too, but in many areas that finishes once DC start pre-school.

Nowhere have I said the system is perfect, it’s far from it, but there is early intervention out there, but parents have to fight for it. Sadly, DC whose parents know the system and can advocate for their DC get better support. It shouldn’t be like that but it is. To say it’s ABA or ”do nothing and see where it goes” is ludicrous as it’s just not the case. There are charities and other support to help parents e.g. IPSEA, SOSSEN, Contact, Cerebra, Scope are helpful resources on navigate the SEN world.

Although I know I'm sticking my nose in a debate that I wasn't necessarily part of (sorry!) I'm just adding that although I can see everyone's very valid points, I can empathise with the frustration.

It was our area SENCO post that stayed vacant for months. So the nursery SENCO said she wasn't sure how to help us, and said to keep going with the ABA "because you're clearly not going to get anything from the area SENCO before DS leaves for reception". The NHS SLT was much the same, saying it was great I was lining up private support because "I'm not really supposed to say this, but I don't think this (her video call) is enough but it's all I can do right now". And I did apply for the EHCNA myself as, again, with no area SENCO, this wasn't even on the nursery SENCO's radar. Luckily, our ABA consultant prodded us before we left it too late, pointed us to the IPSEA templates, and provided us with extra written evidence as the nursery couldn't provide anything substantial.

And totally agree - ABA is not the only answer and I do wonder if DS is almost getting to the point where he no longer needs it beyond using simple techniques in everyday life. His receptive language has come on so much that he's now much more engaged in daily tasks and social activities (though there are still lots of challenges!) It now feels like if we could help him better with his sensory seeking, and help him progress further beyond his echolalia (so, SLT and OT) he'd have all the tools to succeed.

I do think everyone's experience with ABA is probably a bit different because the support can be so tailored to the family and the child. Our consultant recommended the Early Start Denver Model (so, technically not most people's idea of old school ABA but uses some techniques) to help build his joint attention and play skills. But she's also provided so much additional advice and signposting that she's effectively doubled as a SENCO - only better trained, better qualified and more experienced in supporting children with ASD than any actual SENCO we've encountered yet.

I think we may also just be extremely lucky we found such a great consultant. But it's for this reason that I can really empathise with the feeling that ABA is the "only" thing out there. Because aside from one video call from the SLT and two hopelessly unambitious, no-longer-relevant learning targets in two years from the area/nursery SENCOs, it's literally all we've had!

@brightstar1988

No. A Mainstream school cannot refuse a child because he has an ASD diagnosis.

I was mainly talking about specialist schools where they are selective in the profile of children that they take. So say you have a child with ASD and you found a Dyslexic school which-although not ASD expertise but can meet your child's need, the school would very much likely refuse to admit a child with ASD due to their diagnosis. I do know of a few children with ASD who have been admitted to Dyslexia specialist schools but they also had 'Dyslexia' or their ASD was very very very mild.

Communication becomes more complex as children grow and beyond into adulthood. Hence, the ASD becomes more obvious with age.

Scratchynose, we are working with the Early Start Denver Model since about 5 months, it has been nothing but a success, we can totally recommend it. We noticed had improvements communication intention, eye contact and speech. Joint attention is still work in progress. ESDM uses ABA principles in a naturalistic setting and the implementation at home, although exhausting, is joyful. We tried the old school ABA (sitting in a table, etc) and it did not work for DD. We work with a remote tutor as it was difficult to find one where we live.

With regards to ASD communication difficulties increasing as the child grows older, I must say I do not necessarily agree. If a child received appropriate therapy at an early age, most are capable of improving their communication and many improve it to the same level as their NT peers. This is backed up by research. The conformism that ASD will only get more obvious and challenging with age is from my perspective misinformation backed up by NHS professionals, due to lack of appropriate resources to provide to the child. We were already told by nursery, Drs and even family in the UK that we should get prepared as DD might be non-verbal. To everyones surprise now she does speak at least 50 words. I am not giving up on her.

1 and 1/2 year of symptoms now, all we got was a 30 min consultation with a NeuroPaed, refer to ADOS assessment (waiting list), refer to SALT (with resistance of GP, now on waiting list), and a so called “Nursery Inclusion Funding”, where they portrayed DD as a severely disabled child with the maximum level of support required, to get more money to go to general improvements of the nursery. I am not going to a Tribunal to get a suitable EHCP, considering the low level of services we experienced through this 1 and 1/2 years, I am nothing but sure the services provided with an EHCP will be as bad as the ones we have been offered, with this same conformist idea that her ASD symptoms will get worse/more obvious. I’d rather not have professionals with such mentality in the intervention program of DC and would rather use our resources and energy implementing a program and paying for the tutors.