aba

ABA (or "applied behavioural analysis") has taken over our lives.

I won't go into huge detail about what ABA is but, in essence, it is a form of teaching that involves looking at certain behaviours and their context, and applying ABA methods to change that behaviour. A simple example might involve getting a child to sit on a chair. The ABA tutor would give an instruction ("Sit on the chair"), provide prompting (physical or verbal) if necessary and when the desired behaviour occurred, i.e. the child sat on the chair, a reinforcer would be given to the child straight away. This could be anything from edibles, to social praise or a favoured toy. Over time, reinforcers are faded out, desired behaviours are positively reinforced and hopefully occur more often. We all learn certain things like this naturally. ABA just formalises and intensifies the learning.

Our programme is mainly home-based. Blue has three hours of ABA a day at home, excluding weekends. He attends mainstream nursery for four afternoons a week and is shadowed by an ABA tutor for two of those sessions (soon to be upped to all four). He has two wonderful tutors. One, Dell, is experienced and working towards her BCBA certification and the other, Doda, is a novice we trained up - his baby sitter, in fact.

We set up our programme through PEACH after looking at a couple of other organisations, including UK YAP, but we found our experienced tutor on the ABA VB Community notice board. The PEACH consultant sets up the targets and suggests how they might be achieved and the tutors work on those targets with Blue. Our current programme includes everything from verbal imitation to fine motor skills.

The programme has been running for 3 months, though in reality with Christmas, illness and holidays, it's less than that. We've seen the most improvement in speaking. Blue had very limited expressive language before the programme, but now he is much more chatty. His echoics have come on tremendously. He will have a go at saying almost anything. His requesting has improved since the addition of the "Blue wants..." phrase to his repertoire. He tends to only request certain things ("iPad", "up", "help", "blanket" and "juice" are the main ones), so I'm looking forward to seeing an increase in the number of things he will request. His receptive labelling (e.g. pointing out the correct picture when asked "Which one is "duck"?") is excellent. His expressive labels are also good (e.g. giving a correct verbal response when asked "What is it?" and shown a picture of a duck), although a lot of his expressive labels are word approximations.

The other big area of improvement is in general compliance and following direction/instruction. Before the programme started, Blue simply would not to anything you told him to do.

We actually have two consultants. As well as our lovely PEACH consultant (who, it must be said, is overworked), we have a dynamic, firebrand, Norwegian. He had worked with a boy who attended Blue's nursery and achieved great results. We agreed to work with him on a documentary about ABA. I can't say much about the documentary at the moment, but I'll share more later.

Our Norwegian consultant managed to explain to me what the ABA programme is trying to achieve. He explained that neurotypical children learn incidentally during all their waking hours. Autistic children generally do not learn successfully in this way. If a child gets an ASD diagnosis at two years, we need to set about making up for two years of lost time. Personally, I think that's not exactly right. Blue was learning, but he was learning atypical things, like what a hexagon is. Even so, it made me realise that our teaching needs to permeate all our days. That's not to say Blue needs to have ABA from dawn to dusk, just that we need to be constantly on the look out for opportunities for learning. Reading a book is a chance to try out some receptive and expressive labels, playing with Playdoh is a chance to practice some craft imitation and so on.

ABA claims that it is the only research-backed early intervention programme: we take that with a pinch of salt. It is true that the research is out there and reflects positively on the programme, but a lack of research about other methods does not mean they don't work. On a visit to Queensmill School, The Sensible One and I told the Head, Jude Ragan, who we much admire, that we were contemplating an ABA programme. She said "Fine. So long as you do something." I think she is right. ABA is not rocket science and, to coin a further cliche, there is more than one way to skin a cat. The important thing is to look at your child's deficits and think intelligently about how to address them. This may well require the application of some expert knowledge, in the form of books, at the very least, or perhaps a programme like ABA or Early Bird.

There seems to be a lot of misunderstandings about ABA. It's based on the work Dr Lovaas who worked out of UCLA in California. His highly structured programme used "aversives" as well as reinforcers, i.e. shouting, striking, etc. With one controversial exception, aversives are no longer used in Lovaas-type programmes, thank goodness. Some people are also concerned that the programme will eliminate any individuality or creativity in the participant. The latter criticism is why I strongly believe that the programme should be parent-led. You need to make decisions about what behaviour should be targeted and what is harmless. For example, Blue has some mild stims (finger and hand posturing and a quiet verbal stim). I do not see the need in targeting these behaviours because they do not interfere with his, our or anybody else's life. There are other ethical objections related to the neurodiversity movement. I have some sympathy with the movement as I have no doubt that some of Blue's inherent blueness exists because of his autism and I would hate for him to lose that. Again, I think ABA can be used, carefully, to help autistic individuals in certain areas. When Blue has an opinion on these matters, the decision on what help he receives, or not, will be his but, until then, we'll just have to do the best we can.

I don't know how long the programme will run for. In September, Blue is meant to attend nursery full time. We'll have to think about whether he is ready for that, or whether ABA should continue to run alongside nursery for a while longer. Whatever happens, it really feels like ABA has put us back in control.

diagnosis

I think the diagnosis, when it comes, must be a very different experience from family to family. I can well imagine that in some cases, it comes as quite a shock. For us, receiving the full diagnosis was just the final, unwanted tick in the box. We had been in receipt of a working diagnosis for six months and Blue's paediatrician had already told us that he had not seen anything to change his mind. So when we walked into his consulting room, we did not expect to hear anything new or surprising, and we didn't.

The road to diagnosis

If you can discount the period before we raised our concerns with our GP, our road to diagnosis was a short one. My husband, The Sensible One, studied behavioural neuroscience at university and I studied biomedical science. This does not qualify us to diagnose our own son, but when those first concerns reared up, we were programmed to analyse and research what was in front of us. The final straw which propelled us to book an appointment with our GP was Blue's apparent speech and language delay. We walked into the GP, laid out our concerns and asked to be referred to a specialist.

Two months later we had a consultation with a consultant paediatrician at our local Social Communication Disorders clinic. We received the working diagnosis on the basis of what was observed at that first appointment, which lasted about an hour and half. The consultant took a history, went through a questionnaire (possibly, the M-CHAT), and he and his speech and language therapist (SALT) observed Spike's play and general behaviour.

A few months later, Blue was invited to attend a Social Communication Disorders group which consisted of 4 clinic-based sessions over one month. They were led by a SALT and were a repeated series of highly structured activities, including free play, parent-led play and a sensory activity.

Between the initial appointment and the diagnosis appointment, we saw occupational therapists, physiotherapists, SALTs and completed an alarming number of questionnaires. The outcomes of these appointment were fed back to the consultant and contributed towards our diagnosis.

Our diagnosis

We had been sent the various reports as they were written, so when we saw the consultant again, he asked if we wanted him to go through them. We said we did not. He then told us that what he had seen and what had been reported to him by us and by the team was consistent with a diagnosis of Autistic Spectrum Disorder.

As you will probably know, autism is a lifelong, pervasive developmental disorder and it would therefore not have been appropriate for the consultant to be full of light and laughter - or empty reassurances. However, I was quite surprised that he seemed unwilling to allow us any hope or optimism, mainly because the NHS seems unable to get beyond the fact that they can't accurately predict the future. Obviously, if we ask the question "Will our son be functionally independent and lead a happy life?", the correct answer is "We don't know." But, I really don't see why they can't then go on to offer the benefit of their experience. Based on the progress he has made, and had already made at the time of diagnosis, we now know that the outlook for Blue is good. There is a good chance he will be able to go to a mainstream school, that he will be functionally independent as an adult and that he will learn to talk and use language appropriately.

Obviously a "good chance" is not the same as something definitely happening, but as a parent I think it is very, very helpful to be given some sort of an idea of what the future might or even will likely hold. Most people are not stupid, they know that "likely" does not mean "inevitably" and "might" does not mean "definitely". Of course, the flip side of this, is that parents should be told if there is little chance that the child will be functionally independent, learn to talk and so on. That would be so much harder to hear, but it should be heard. Mind you, I only have my own experience to draw on, perhaps other people have been given more guidance.

Even when the prognosis is poor, I think the medical professional giving the diagnosis should try very hard to find something hopeful and optimistic, though truthful and realistic, to say to the parents. An ASD diagnosis is a huge mental and emotional burden to give to a parent and they will need strength to cope with it. Being told that, for example, there is a highly experienced team of professionals waiting to help them do their best for their child would, I'm sure, be a welcome thing to hear.

Treatment options

The most practical form of support that can be offered at that early stage, I think, is some sort of professional overview of the treatment options available. Following our diagnosis, we had an appointment specifically to go through this. In reality, all it amounted to was the consultant handing over a piece of paper listing some treatment options and a second piece of paper which was a print-out from researchautism.net (a fabulous resource, by the way) grading various interventions and treatments. I was asked if I had any questions about any of the treatments and that was the end of it.

I can't remember what questions I asked, I think it was something to do with ABA, but I do remember that the responses were so wishy-washy and non-committal that I didn't bother to ask any more.

I hate to think about some poor parent who has just been landed with an unexpected diagnosis and who has never heard of ABA or AIT and is then asked if they have any questions about this webpage.

To sum up, the whole diagnosis process seems to leave parents thinking "What now?" which is a horrible position to be left in. I would like to see parents leaving the diagnosis appointment with a suggested, personalised action plan in hand. I know it's trite and not at all the same, but a doctor would not say to a parent. "I'm afraid your child has cancer. I can't give you any idea of the prognosis. Here is a list of places where you can research treatment options."

Ports of call

My suggested first ports of call following a diagnosis are:

The Complete Guide to Asperger's Syndrome by Tony Attwood
More Than Words by Fern Sussman
The National Autistic Society
and, as I mentioned, Research Autism is a great place to get reliable assessments of treatment options.