Best early intervention for 2.5yr old with ASD

[Minimeee]

Hi everyone

DD was recently diagnosed with a social communication disorder and we've been told verbally that it's probably ASD (and certainly the symptoms seem to fit).

She's 2 yrs 8 months and we realise we're lucky that problems have been spotted early, but we're struggling to get impartial advice on the best form of early intervention. At the moment we have an hour of speech therapy (private) and an hour of portage each week, which feels like a drop in the ocean. We have a 7 wk old baby to deal with as well so she really isn't getting the attention she needs at home

We are considering 2 options - a home-based ABA programme, or 4 afternoons a week in a nursery which specialises in ASD and follows TEACH (expensive and logistically difficult to get to..). We are really struggling to decide which is the best way forward, and are finding that no-one seems to be offering impartial advice - most people we have come across seem very anti-ABA.

Neither option is cheap but I want to understand what's best before we worry about the £££....
It also feels like the special nursery has a philosophy where they recommend special schools, whereas ABA seems to be aiming for mainstream education - so feels like we may be making a big choice at quite an early age!

I know no-one can tell us what to do, but 'd really love to hear about people's experiences and thoughts, especially on ABA as there seems to be a lot of negativity around it (children come out "weird", can't generalise, won't "perform" without rewards etc).

In case it's useful, dd is verbal & communicative but with lots of echolalia

Thanks everyone

Everything I have read in the past 2 years says ABA has the most evidence. All research has some flaws. I have heard those involved in ABA research at the cutting edge be quite open about this. Any research involving young children is going to be difficult to apply. But there are small flaws which do not alter the general outcome of the study and massive flaws that undermine the study completely. ABA is so well researched it falls into the mild flaws category. But in ABA flaws in research tend to be magnified because people in power don't want to fund it. There is a real dishonesty about ABA which goes right to the top of groups like the NAS. But most of us who have tried it have never looked back because we see the evidence every day.

No other approach is given the scrutiny and criticism which ABA attracts. The UK govt funded and are possibly still funding the Manchester PACT study which was an abject failure - made no difference at all - because the autism top brass - the names that pop on in autism conferences month in and month out want to believe just training the parents to play with their child better is the answer - its nice, cosy, romantic idea of therapy and really cheap - and lets everyone except parents off the hook. They deliberately chose to fund a programme on the basis it could be delivered cheaply via existing NHS resources (SALT). Surprise surprise it failed.

A decade on from the ASD guidelines every LA has an autism outreach service despite no-one ever doing a shred of research to prove that the autism outreach / mainstreaming model works. I have scoured autism research but cannot find anything which says it works. In my area typically developing children achieve in the top 5% of State school results in the Country - we have great schools. But for autism we achieve in the bottom 5%. How can that be? How can an area with such great education services fail children with autism so badly. Needless to say they hate ABA and have a policy that every child goes to mainstream.

ABA is proven - especially for young children. The US National Standards Report on Autism looked at all interventions and came out last year - you can download it online. ABA based models were almost the only ones accredited. Very established approaches like TEACCH, PECS and social stories were found to have insufficient evidence. A good book is Autism Partnership - Ron Leaf - Sense and Nonsense which talks about the myths about ABA.

Portage isn't impartial - they are employed by the LA - who will be who you will be asking to fund ABA. Also there is a UK study which compared portage and ABA (might be on Research Autism) and ABA came out better. Research Autism plays down ABA (it bigged up PACT). I have heard the head of Research Autism speak about ABA and he is scathing - makes me wonder how he got chosen as the Head of a supposedly independent research facility. Whilst they publish the studies you will never see Research Autism backing ABA in the way they highlight other more acceptable approaches. Many high up in the NAS do not support ABA being firmly wedded to the TEACCH model they use at their schools.

When portage say it is not proven ask them for their evidence and outcomes - I have asked for evidence for 2 years and have never had one piece of evidence or research to support my LAs approach.

We have done ABA for 18 months. Initially a part time parent run programme, but for the past few months a FT programme (ordered at tribunal). DS made massive progress in the first weeks, he then plodded along making good progress - which dropped off when we got caught up with tribunal and the hours dropped off - now he has a proper programme he is just flying through stuff his supervisor can barely keep up despite seeing him at least once a week. He is just 4. We wasted 6 months deciding whether to do ABA or not and spent 12 months doing part-time mainstream nursery with 1:1 and outreach (alongside ABA at home) which was totally useless he learnt nothing at nursery. Just go and see some ABA, when you see it it makes alot more sense.

Your child is the best age - before 3 is the best time to start. Criteria such as underlying IQ, age at start of treatment, parental involvement in ABA, and how quickly a child learns in the first 3 months are the indicators of whether a child will do well with ABA. We decided to fund it for 3 months part-time and then evaluate. This way it seemed less of a commitment. It also got some professionals on side eg mainstream nursery as we were able to say well we're going to trial it for 3 months and see (so they could see we had not been sucked into a money grabbing cult) and asked them to have an open mind. They were blown away by the changes in DS in the first fortnight.

It is scary being where you are and making that choice. But as Star says the only way to know is to try it. My only regret is that I wasted 6 months before we started and could not afford the hours DS needed. Chances are you will know quickly if ABA is for you or not. Make sure you choose a provider that lets you stop services at any time - all the reputable ones do - they have no need to tie you into contracts.

We have been doing ABA for 2 years now, since DS was diagnosed at 24 months. And it still makes me so very angry to think of all the lies/ ignorance spouted by the LA employees (SALT/ Portage/ Paed) re ABA. They clearly knew NOTHING about it whatsoever, yet felt qualified to denigrate it, claiming it would turn my son into a robot and be 'disruptive to the family'. Please excuse my French, but how fucking disruptive to our family would it have been to have a child who remained non-verbal and tantrumming constantly through sheer frustration at his inability to communicate!! And he doesn't talk like a robot at all, but even if he did, FFS, I'd take that over not speaking at all!

Please don't ever trust the establishment view. It cares not one jot about the life chances of your child but instead fobbing you off with the cheapest possible option. And how could they ever support ABA? Think about it, it would be like turkeys voting for Xmas.

My LA's 'intensive intervention' programme for my beautiful 2 year old consisted of a Hanen course, a portage session every fortnight (term time only), with someone who had not a clue about motivating ASD children, and 6 SALT sessions. That was it, until he turned 4, when he would be eligible for the specialist nursery that promised that most depressing of all help, 'eclectic provision', which simply means the cheapest mish mash they can cobble together. And screw your child's life chances.

My son is neve going to be high functioning, but ABA has given him a voice, and skills we could never have dreamed he would have. And i thank god every day that someone took the time to point me in the right direction.

The NAS does take "impartiality" to an extreme as I happen to know that the Chairman's autistic son was on a fulltime, intensive ABA program for some years and I think still does ABA to some extent. The woman who is the Head Councillor, which is the group that the Board is drawn from and where it takes its advice and does much planning, is also an ABA person and Virginia Bovell who co-founded TreeHouse (Nick Hornby's ex-wife) is on the Council. I think there are several other on the Council which is about 25 people in total.

The Research Autism guy spent the whole time talking about how Lovaas had started out trying to 'cure' homosexuality and how ABA used punishments. Well to be fair Lovaas was a student and it was 1960s America. At that time all our children would have been taken off us and put in institutions. Modern ABA is a world away from this. Lets face it in the 1960's most schools used corporal punishments and being gay was illegal in most places.

The autism outreach TA turned up after 6 months of no intervention stayed 1/2 hour and said 'well you seem to be doing all the right things I don't think I need to come again' - when I challenged her about that she said the intensity of ABA must be very intensive / disruptive to our family - and stressing me out. ABA is hard work but if it works its also a massive relief and can make you feel positive about the future.

The outreach teacher also told our tribunal she was an expert on ABA and when questioned admitted this meant she had gone on a 2 day introduction to ABA course but had never used it with a child.They told our nursery it was tantamount to child abuse - whereas letting DS do what he wanted - follow his lead - left him isolated, mute and stimming 24/7 was the way to go apparently. They blasted ABA but did nothing for DS themselves not one single programme in a year.

We got fed this line all the way to tribunal by people who had clearly never even seen any ABA except on a training video yet called themselves experts in it.

The only person you can trust is yourself. You are not getting impartial advice. Everyone else has an agenda - which usually involves minimal spending. We got refused assessment, refused portage, refused specialist nursery, refused direct SALT, refused OT, refused outreach all because DS did not apparently need it, he was too mild and high functioning despite medical reports saying he was the most severely affected child the paed had ever seen, practically non verbal and they had no idea if his IQ was intact. Our LA even ignored their own EP so they could offer cheaper provision. They literally plucked the odd line from each report which helped them deny provision and ignored the rest. It is such a huge relief that I have had a few months of not having to deal with these people.

One of the things I liked about Lovaas, as opposed to other ABA programs (we are talking over 10 years ago) is that it was run by academics. They were somewhat commercial in order to spread their services but they were not at all "marketed". The commercialisation, economic competition and slick marketing only came in with VB. I liked the fact that the Lovaas providers were rather bad at promoting their product and more interested in the dry, academic side. That's all changed!

Ours is not commercial. They are a not for profit company. And they all drive old bangers. Well the American directors probably don't. And the office is above a dentist. I want to hold a meeting with the LA there so they can see its not a commercial operation just a bunch of great people doing amazing work.

SWC I was thinking the very same - thank god I was around to hear Moondog say it is the only intervention with any evidence supporting it ... and people like Pipinjo who show that you can just do it & SOSCE & all the others who've been so generous with their time & advice. ABA seemed like a no brainer really - if it didn't work we'd have tried something else but I can't think of anywhere better to start - it's such common sense that it's difficult to see why it wouldn't work

Hope the tribunal preparation is going well ... everybody loves our programme now & CAMHs/SALT are falling over themselves to cooperate - why the sudden change? Because they've realised we're not going to ask them to fund anything.

I'm not sure about commercial or not - we've only ever paid people for the hours they've worked - that seems reasonable? And OMG looking at the costs of other private therapies - even our consultant is cheaper than some of the OTs & SALTs locally (not sure what car he drives though ;) & our tutors tend to travel by bus!)

phlebas - your consultant is thinking about changing his car

and he has 2

but both are nice modest family cars!

when's your tribunal, swc? and what are you after (home ABA, shadow in school?)

it all seems like a distant memory for us now, and it's been less than a year. I hope it all goes well.

have you got anyone representing you?

it was such a stressful time for us. and we didn't even get to tribunal . I think it is because it is the peak of something that has been building for years, and you know that however unreasonable and useless the LEA are, you won't be able to say that...

it is a bloody ridiculous system, tbh. I really wish that LA's would stop denying that ABA is effective. after all, there are many people out there for whom TEACCH works, as does support in MS without ABA. so not everyone would want it anyway...

what are the odds of that happening soon?

ours (same overall LA, as you know) settled well before tribunal in the end - date set for July, settled in April, out of the blue. and we were pushing for ABA school - and one with no peer group at that...

how old is your ds now? are they lining him up for school place?

ah, sorry, swc, but your post did make me a little - a bitter, been there, done that snort though it was...

what have you told LA regarding school? are they worried you would want to chase funding for there? I would say they are hoping ot thoroughly discredit and demoralise you, so that they don't end up funding a school they don't want ot forevermore (whether you have indicated that you woudl go for fees or not). in our case, the wholehting rested on transport fees - LA fought it all on that, despite the fact that we had stated several times we would not be asing for transport, not now, not ever (and had put that in writing, and submitted to tribunal too). they couldn't trust us - wonder why that would be

what are LA suggesting? they're not trying the old "zero cost" chestnut, are they? (tried that with dd1, as they wanted her in state SN school. honestly, do they think we are all stupid? it might be an already allocated budget, but it still actually costs something, and therefore dd1's education there would not have been free )

so what provision are they suggesting? what doe sthe statement say, that you are appealing?

should be easy enough to cost up, in rough, to argue against.

deep breaths - it is all so frustrating. our cons. reckoned that if the LA continued ot be so pointlessly obstructive, it wouldn't look good for them (although it wouldn't necessarily count in our favour either...)

Hi Minimeee

My DS, now 4.5, went to a ASD specialist TEACH nursery in Surrey for 2 years. The nursery is very highly regarded and I was bowled over by their dedication. However, in hindsight, if I had those two years back again I would go down the intensive home ABA route.

pinkmoomin - you too?! blimey, there's alot of us here who had children there. small world.