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Best early intervention for 2.5yr old with ASD

52 replies

Minimeee · 08/02/2011 13:10

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

OP posts:
Toppy · 08/02/2011 13:29

Hi Minimee - my DS now aged just 3 was diagnosed in Nov with ASD aged 2yrs 10 months. My biggest question post diagnosis (which itself involved 'heres some leaflets and call the NAS') was who tells us what is the best route forward. No-one does and it is VERY frustrating. I immediately went into action and read lots but the best information gathering I did was to speak to some other mothers - I spoke to about 6. They were either mothers who'd I 'd been put in touch with when I approached the local mainstream ASD school for advice or friends of friends. You are doing really well in that you have narrowed it down to the two brapd options of specialist nursery or home programme.

After much talking to people who'd had miraculous results with home based ABA and others who were pleased with progress at the local school I decided the the option I was most comfortable with was a specialist nursery. It was difficult to come to that decision because everyone thought their approach was best but I looked at us as a family as a whole - what feels comfortable for us and also what sort on environment DS operates well in. 6 weeks after diagnosis we started DS at the specialist nursery (would have been sooner but for Christmas) and I now spend a small fortune and 2 hours a day in the car ferrying him around. I also have a daughter aged 16 months so totally understand your concerns.

Another mother told me to go with my gut instinct and get something in place and then once I had fulfilled that immediate overwhelming need to be doing something there was always plenty of time (and there is actually despite the initial panic) to explore other options that felt a bit daunting. Therefore I have just bought a couple of ABA books to see if I can apply any suitable techniques when we are at home. The key is to always ask is this working - ifit is not and you are seeing no progress it might be time to change track.

I should also add that a HUGE bonus of attending a specialist nursery miles from home is that there is a whole army of other mothers in the same position with who you end up going for a coffee with and can share advice and tears - this has been a very exciting plus for me. It makes you feel less alone. You also get a lot of advice and help from the staff themselves who are very experienced and will work with you to make the best choices for your child

Am really happy to chat off MN if you want any more details - just PM me

Toppy · 08/02/2011 13:33

Hi again - hope you don't mind but I just had a quick look at another of your posts. We live very close by. I suspect you may be considering at lot of the options I have looked at. Once again am really happy chat offline if you think it might be useful

ArthurPewty · 08/02/2011 14:00

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Message withdrawn at poster's request.

lisad123isasnuttyasaboxoffrogs · 08/02/2011 14:35

DD2 was first seen at 2years 2 months and we were told she more than likely had ASD. She goes to a specialist private Autism preschool which has brought her on loads. She loves going and they are very good at pushing her but not too much. There is loads of staff and they run all year too which is great in the school holidays as we have dd1 too.

sickofsocalledexperts · 08/02/2011 14:41

My DS did 1 1/2 years in a specialist autistic pre-school nursery - it had zero effect, though he enjoyed it. We then did home-based ABA and it was showing results (in terms of speech and improved behaviours/stims) within 3 weeks. A lot of the research points to ABA as the most effective early intervention; there is no such research on TEACCH. That said, there is a lot to be said for the social side of nursery and I did both ABA and nursery for a while, which to me was an ideal combo. Good luck with whatever you try!

Minimeee · 08/02/2011 16:40

Thanks everyone
Toppy, that's a great point about meeting other mums who have to deal with a "commute"!

sickofsocalledexperts - we've been told that it's difficult to combine ABA and nursery as they are based on different reward systems. Did you find that an issue?
Thanks

OP posts:
sickofsocalledexperts · 08/02/2011 17:10

No, I don't think that is an issue between ABA/nursery. They will say almost anything to put you off it though, as the establishment on ASD (eg autistic nurseries based around TEACCH, state school uits, state special schools, LA, SENCOs etc) will say a number of things to try and put you off ABA. I have always thanked the lord that one particular mum told me in no uncertain terms that I should not listen to them, but that I should try ABA for myself. I have always been so grateful to her for saying that, and I suppose I am trying to pass on to others what she did for me. Without ABA, it is very clear to me that my boy would probably not now be doing the following: a) talking b) writing c) reading d) would still be hitting/biting/headbutting me and it would now be quite a serious issue as he is BIG e) coming out in town with us, on foot or on bus etc, without tantrumming f) not getting his own way about EVERYTHING g) not stimming endlessly and , for instance, flooding the bathroom. The list goes on - and at least part of the success of ABA was that it gave me "permission" as a mum to treat my boy like a normal child, ie to tell him off very firmly when he bit another child,and yes even to shout at him so he knew who was boss. I think that there is some very muddled thinking around on the subject of discipline for SN kids. Their SN do NOT, imo, absolve them from any responsibility for their behaviour. I remember a mum explaining to me that the reason why her autistic boy was biting my arm was because "he's anxious, due to sensory issues". I told her , nicely I hope, that I didn't really care WHY he was biting me, I just cared THAT he was biting me. You can teach a child, if you get in early enough, not to bite/hit etc, but you need to be prepared to be the boss, to show them in no uncertain terms that their behaviour is not acceptable. And somewhere along the line we've been told "don't shout at children" or "only praise the good behaviour, don't blame the bad". It's nonsense, imho. Before 5, especially with boys, there's no point reasoning, you have to show them what's wrong (ie put them in another room, ignore, say no, hold their hands away from you). With autistic kids, espcially my boy who was then non-verbal, this is even more the case. And if one more person tells me about the bloody "naughty sStep".... It just doesn't work to give an autistic child time-out by themself. They LIKE having time alone, the very word autistic means "likes own company"! Sorry, rant over! I just feel really strongly that people like a previous poster are being made to feel wrong for shouting at a kid who is headbutting them in the face. It's all very well for the LAs, teachers etc, to be all sweety-sweety - they won't be there when the kid is 18 and 6 ft 5. Ok, rant over!

redismyfavourite · 08/02/2011 17:20

minimeee, if the ASD nursery you are talking about is the one I am thinking of, then yes, it could be difficult ot combine with ABA.

bcause they are categorically against it, and will hinder any little thing you might want to do which would need their cooperation - eg when it comes to potty training, they wil not support your method but will only go by hteir own. fine if that works, and if oyu can use their methods at home, but not so fine if it interferes with what you want to do, or even worse sets you back.

I speak from personal experience here.

ABA is not necessarily aiming ofr MS. My child has ended up in an ABA school. The special nursery has had some good success with placing children in MS too.

I cannot tell you what to do. I am happy ot answer questions about the special nursery though, having had a child who went htere, and having run an ABA programme at home - so I can answer both sides of your query!

ABA has been the answer for us, but the nursery was a necessary evil, as it helped us gain the ABA school on our Statement.

sickofsocalledexperts · 08/02/2011 17:23

Minimee, if you have not been put off by my rantings, and would like to talk mum-to-mum, do PM me? I have a feeling we are talking about exactly the same nursery, and yes they would very probably advise your boy to go next to their feeder/sister Special school. They are also very anti-ABA and will (sweetly) make you feel like you are enrolling your son with a dangerous cult if you so much as text an ABAer! It is very odd, as I and many of my ASD mum friends have found ABA very effective, yet have been marginalised by the "system". In the US, it's the absolute norm for early intervention, and I think we will catch up with that in a few years.

sickofsocalledexperts · 08/02/2011 17:41

Ah yes, Red, the autistic nursery was useful for that reason too - in acting as a counterpoint of shitness, against which to prove that ABA was a very effective teaching methodology for my boy, leading to my winning funding for ABA.

Marne · 08/02/2011 18:30

Dd2 was diagnosed at the age of 2.5, she was referred to a sn nursery but also went to a ms nursery (2 mornings at each), sn nursery helped her to communicate with PEC's and worked on her sensory isues, ms nursery helped improve her social skills and her speach (being around more verbal children). She also received music therapy at the sn nursery which helped her find her voice (make noise).

She's now seeing OT, i wish we could have seen OT a lot sooner, we had to wait 2 years to even be seen (after keeping on), her OT has been great and has suggested things to help dd's sensory isues and they go into school to offer advice.

Early intervention has been the key for dd's progress, i was saying to dh (a few days ago) 'god knows what she would be like now if we didn't get a early dx' (probably non-verbal and non-responsive).

She's 5 in a few weeks and i can now have a convosation with her, she follows instructions and understands more, she's in MS school with full support and is keeping up (if not a little ahead) of the others in her year. Her sensory problems are now her main problem (a year ago language was the problem) but we are working on this with OT and outreach from the sn school.

stardustmum · 08/02/2011 18:38

I agree with sickof here and will be watching this thread closely. ABA and specialist nursery can definitely be combined and don't let anyone tell you otherwise.

My DS was diagnosed at 22 months. He is now 2.4 and we have been running his home-based Verbal Behaviour programme for the past 4 months and have seen amazing results in such a short space of time. He has also been going to a specialist nursery for 2 afternoons a week for the last month, mainly for it's OT/sensory integration component. The combination seems to be working pretty well and I can sleep at night knowing that he's getting the best of both worlds.

As someone who has been at your crossroads, I strongly urge you to try out an ABA programme through a reputable consultant (beware of cowboys!). It will also free up a lot of your time - my DS's therapists prefer me to leave them to it and just pop in every 30 mins or so for an update on progress - which leaves me able to carry on with other stuff. Also, look into Verbal Behaviour as an ABA programme. I can't recommend it enough.

It's incredibly frustrating how all types of intervention claim that theirs is the best and discredit all the rest. But ABA is the only intervention backed by scientific evidence. Anti-ABAers recommended that I go with the intervention that "feels right for my family" but in the end I went with one that is right for my child.

Feel free to PM me if you'd like to chat further.

BialystockandBloom · 08/02/2011 18:56

Agree with sickof too.

We started Verbal Behaviour ABA for our ds 6 months ago (when he was 3.4), combining it with part-time nursery (with an ABA tutor as shadow). His progress during the past six months has been astonishing, and I hand on heart believe it has been down to ABA.

ABA can work on any aspect (language, socialising, play skills, interaction, the works).

What you do does depend on the specific difficulties your child has.

I have to admit I havne't had experience of sn nurseries/pre-schools. But in our case ds's social difficulties are actually quite mild, and we feel can improve more through interaction with nt peers as he copies well and learns through this.

Have to put dc to bed now but will post more later.

Phlebas · 08/02/2011 20:23

Anti-ABAers recommended that I go with the intervention that "feels right for my family" but in the end I went with one that is right for my child.

This is exactly what I have experienced. Not one single anti-ABA professional has suggested that ABA would not be the best therapy for ds, none of them have implied it would be damaging & none of them have been able to suggest anything else that might work as well. When I asked why they wouldn't recommend ABA all they could come up with was that it was hard work for the family. When asked what their provision (crapola SN nursery & specialist autism teacher 'input') would do, all they could say was that it would provide 'respite and advice'. I told them they were effectively writing him off with that shit & they didn't disagree.

We turned down the SN nursery because ds needs to be around NT peers, he would have been the highest functioning child there & it just wasn't individualised enough for him (or any child imo). He is at a private monte preschool & it works beautifully with ABA - our supervisor goes in for a session every month or so & ds' key-worker has been trained by him & our consultant. We have no LA involvement at all which is the only way it works - to quote the LA 'we do not do ABA, we have the best (!!!!!!) autism provision in the country'.

I could rant for years.

Davros · 08/02/2011 21:23

Sorry, haven't read all of this but would point out that most SN settings these days WILL use behavioural methods. That means things like reward charts, countdowns, prompts, ignoring, redirecting etc. In our day they used NO behavioural methods, there actually weren't any sn nurseries in our area at all so we did home based ABA, we really had no other choice. In those days, because of there being so little provision, our LEA did fund ABA. DS would have wasted his time at nursery, he was not sociable, interactive or connected at all, he had to learn those things systematically at home first. HTH.

uniqua4 · 08/02/2011 21:25

My sis been working with autism for 20 years, has been bowled over by 'intensive interaction' its a way of reaching to your child and it makes real breaks through, you have to fully submerse yourself in it. An article about it in the times:
How to communicate with autistic children - Times Online.

Phoebe Caldwell is a leading practitioner. In her words:
Not all children on the spectrum will have the same problems: exactly which hypersensitivities and distortions are present in any particular child varies.

In order to protect themselves, autistic children retreat into repetitive behaviours, isolating themselves from disturbing input. Here they can at least focus on at something that makes sense. If they cannot find this coherence, they are in danger of being overtaken a level of brain disturbance that involves confusion, pain and heat and is described as being terrifying. The child may lash out or self injure. Rather than understanding that the child?s brain is experiencing extreme painful sensory overload (described as, ?feeling as if they are being attacked?), Those of us who are not on the autistic spectrum see the child?s behaviour as it affects us: a child is said to be having a tantrum.

Intensive Interaction
Intensive Interaction is an approach that is based on our first conversations in the mother-infant imitation dialogue, where the infant initiates a sound or movement, the mother confirms this and (eventually) the baby moves on. For example, the infant may say, 'Boo' to which the mother responds, 'Boo', confirming what her baby has said. After some trial and error, the baby moves on to try out another sound, say, 'Da'. The point being that the baby learns that if it makes an initiative it will get a relevant response.

Intensive Interaction is a way of working with the child (or adult?s) brain using signals with which it is so familiar that they do not trigger sensory distortions or sensitivities. It uses the child?s own body language to build up emotional engagement.

It begins with observation. What is this child doing? What are they focusing on? We need to look not only at their face, but all their bodily behaviour. Are they scratching their hands, wriggling their feet? We also need to look at any activities that focus on a particular aspect of the world outside themselves. The multitude of ways that are available for the brain to fixate on range from as little as breathing rhythm, to fixations on certain activities or themes such as Thomas the Tank Engine, specific computer programmes - or certain tunes or movements. What they have in common is that they allow the child to cut down on the external stimuli which are overloading their brain, focusing instead on a conversation between their brain and the sensation they are getting from the stimulus. For example, the brain may say to the finger, ?scratch your hand? and the hand will send back a sensation message to the brain saying that it has done this. Since the autistic brain often has difficulty in switching off messages, it is easy for it to get caught up in a repetitive dialogue between itself and the source of its feedback, a ?Do this ? Done it?, Brain-Body Conversation that goes on and on (perseverates) and makes it difficult for us to get their attention.

These repetitive behaviours are more than just ?comforting?. They are the language that the brain understands without having to go through elaborate processing: their sounds or images or feelings seem to be hard-wired in. Far from trying to stop such behaviours, we are going to use them to gain access to our child or adult partner?s attention, rather in the same way as we use a smart card. Once we have the correct pin number we have no difficulty getting in to their account. Particularly with children and adults with autism we can use this approach to bypass the processing difficulties they experience.

We are trying to shift our conversation partner's attention from solitary self-stimulation to shared activity, remembering that what is important is not just what they do but how they do it. As soon as their brain perceives something that it recognises as part of its own repertoire, attention is attracted in the same way as iron filings to a magnet.

So we look at what the child is doing. What we are interested in is not their cognitive capabilities but what they do when they are ?doing nothing? - that is nothing that we would recognise as organised activity. Nor must we be judgemental about their activity if they are focusing on something we might wish to discourage, for example, touching the walls, spitting, rocking or banging their heads. It may not be what we want them to do but this is what has meaning for them. In the midst of sensory confusion, when they do it they know what they are doing. We have to learn their language so we can begin to have a conversation with them.

Like the infant, the child needs to know that when they make a sound or movement, they will get an answer. The question is, what is the most effective way of building this bridge between us?

If we just mimic, we catch the child?s attention but after a while there is a tendency to loose interest. Interaction flags. One of the questions often asked, ?what do we do next?? The answer is that rather than just imitating what the child is doing, we need to treat everything they do as elements of a language and think of our responses to their initiatives like open ended conversations. Using elements of their repertoire we respond in ways that echo their rhythms but also put them in a slightly different way, something like jazz where you have a theme and variations.

For example, in answer to a sound, ?er-er? I might make the same sound, ?er-er? (imitation). Or I might make the same sound but elongate it, ?eerrr?, or shift the pitch up or down, or lift it at the end (a good way of asking a question). I might alter the rhythm. Or I might shift the mode, answering the sound with a tap, or draw the shape of the sound on their arm. All of which gives the brain something it recognises but also, a slight ?jolt? ? ?that?s something I recognise but it?s slightly different?.

It is the ?difference? that shifts the child?s interest from attention (that?s something out there I recognise) to engagement (I want more of this.) At this stage they become interested in the source, starting to following up their initiative by looking back to their conversation partner to see what they make of it.

At the same time we are using empathy to tune in to their sounds or movements but we are not using words, since words are difficult to process. Our aim is to interact with the child?s brain in a way that does not raise their stress level, What we do find is that, as the brain relaxes, the child becomes capable of a range of activities not normally associated with the autistic spectrum. Using frame by frame analysis of Intensive Interaction films, Zeedyk, Caldwell and Grffiths (see reference list) have shown that eye contact increases, the conversation partner moves close and they are generally more socially responsive. But also, as the stress level falls there are also some cognitive improvements, such as the ability to generalise (within the limits of their disability), refer back and particularly, to be able to copy hand movements. Aloneness becomes shared interest. As their perception of the world becomes less scary their behaviour and capacity to join in the world round them normally improves. They show pleasure.

Here's a trailer on u tube:
YouTube - Autism and Intensive Interaction - A new training DVD from Phoebe Caldwell (trailer)

I started repeating my son's repetitive sentences (5, HFA) and we are connecting with it, it really is v. empowering. And our relationship is growing stronger as I enter his world.

Please try it.
x

uniqua4 · 08/02/2011 21:29

sorry link:
How to communicate with autistic children

It works on all levels

asdx2 · 08/02/2011 22:13

Dd was diagnosed with moderate to severe autism a week after her second birthday.I had put in place my own early intervention from her being 17 months based on what I knew from having ds. I didn't stick to any one programme I used what worked at the time to get the results I wanted. Some was ABA, some TEACCH, some Hanen like, some ABC and all 1 to 1 for 30 hours per week.She started nursery late with me accompanying her and went part time in reception because it wasn't as useful as what we did at home. Dd is now 7 and the autism is unnoticeable tbh and she has definitely exceeded all expectations.

Toppy · 08/02/2011 23:52

Great post Uniqua4 - we were introduced to intensive interaction just after diagnosis by our lovely NHS non specialist SALT (who we no longer see - its all gone PECs now) and I have kept it up at home. Went to see Paed today for a developmental review 3 months after diagnosis and she said DS is like a different child and asked what had changed. It is a combo on my total focus on him through II and Hanen techniques and the new educational provision (though he is still in his mainstream nursery for one day a week). I have never actually seen anything official on intensive interaction so I am really pleased you posted as it is something I have felt quite strongly about right from the moment I was introduced to it

I have found this thread really useful - as I posted above, we put DS into the nursery straight away to fulfil that immediate need to do something but I am now exploring all the other options and staying open minded. I do so wish however, that there was not such a stong divide of opinion of 'that is evil/shit and this is excellent' or that consideration of the family implies a level poor decision making. It making me feel even more guilty and confused and its not even my thread !

Minimee - I think your thread has at least addressed the imbalance of opinions against ABA that you have now been exposed to.

cansu · 09/02/2011 08:11

I have two children with ASD. I followed professionals advice for ds1 and did home based ABA for dd2. I have nothing but praise for ABA. We didn't do it as intensively as others as we couldn't afford it but it has helped dd2 to acquire lots of skills. More importantly i think it has given us a way of teaching her that we would otherwise have not had. I agree with others that it shouldn't have to be either / or with the nursery. if the nursery is any good it should embrace what you are doing at home and should complement it. Whilst we did our ABA programme dd2 also attended nursery part time with support. If you would like any more info please PM me and I'd be happy to tell you more about our experiences. Good luck.

PipinJo · 09/02/2011 09:28

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Message withdrawn at poster's request.

Davros · 09/02/2011 10:17

You do need to be careful about expecting ABA (or anything) to make your DC "normal" or be a cure. We did full-on 40hr per week, well supervised ABA with DS from the age of 2.5 to 6 and then he went to an ABA school. He is NOT verbal or anywhere near "mild", far from it. But from where he was, I still think it had a massive effect on his interaction, receptive language, personality development, toilet training, sleeping etc. I also think back to the most basic programme which I didn't fully appreciate at the time "come here". If we hadn't done that with ABA I don't think I could go anywhere with him now, and he's nearly 16. To the outside observer it might look like a failure but, if you know what you are dealing with and how he has improved, it was far from a failure. It also gave MY LIFE structure and a clear way to react and deal with behaviours and situations. As I said before, we also had no other option at the time apart from do nothing.

Minimeee · 09/02/2011 11:57

Really interesting - and heartening - to hear everyone's experiences... One thing that confuses me is why I've heard so many - not just those from other approaches, but also supposedly impartial such as portage, FIS - say that ABA is not proven? My understanding was that although, yes, some of the research on it was conducted by those involved in the therapy, that is also true of other interventions, and that ABA is probably one of the more comprehensively & objectively researched interventions (see, e.g., the Research Autism website). Am I missing something??

OP posts:
sickofsocalledexperts · 09/02/2011 15:56

There is quite a lot of robust scientific research to prove ABA is the more effective early intervention - see the SCAMP (Southampton University) research in particular. I can only think that those who tell you there isn't any, don't bother to read up on autism from one year to the next. There is certainly (to my knowledge) no research on TEACCH, nor I suspect will there ever be, as it is simply too nebulous.

StarlightMcKenzie · 09/02/2011 21:15

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