Stories: Cally Whitham, parent
I have just read the article by by Michelle Dawson – Autism and ABA in the UK – a controlled trial. This article has brought me great peace, and validated early advice and my own gut feelings.
I was fortunate enough to have an excellent speech language therapist for a few short months when my son was 3 years old. She was constantly telling me that the way forward was not through intensive therapies and trying to hammer home ‘life skills’ but through our everyday support and interaction with our son and modelling the behaviour and language he needed to learn. She impressed to me that I must not ‘wear myself out’ with trying to find a cure or by dragging my son here and there for different therapies and medicines.
This approach has paid off well for our son. Instead of dragging him off to therapies he neither enjoyed or wanted to go to, we have done some reading and spent the time with him ourselves. We have included what we have learned into our everyday lives and this has done wonders for him. It has also taken the intensity out of it for all of us and hasn’t really cost us much except for the cost of a few excellent books.
It has always been my gut feeling that this has been the right approach for us. He didn’t want to be dragged from pillar to post to look for a cure, he wanted to be accepted as he was and allowed to make progress as he could and was able, and for us to rejoice in that.
We didn’t go hard out with all the advice in the books either, we read them and then made sensible and realistic choices about what we could incorporate naturally and easily into our lives so that none of us found it stressful. Nor did quit jobs or commitments to do them intensively either. This way the ‘therapies’ came easily to us all. As our son has made improvements we have changed or updated what we do to suit where he is at. This approach has been a great success.
In 2005 we did the excellent Early Bird course through Autism NZ and were thrilled to discover there was nothing new they could offer us because of the reading we had done, and that in fact we were doing all the right things with our son already.
Our son is mildly autistic with significant speech/language delays. He is adorable, really happy, low key, loving and intelligent. We are happy to embrace that about him and to let him be him. Without heavy duty expectations placed upon him due to expensive therapies he has been able to constantly surprise us - at his own pace.
Despite the great improvements he has made in his own time, I have imagined a parallel life where we did go to all the therapies and remortgaged the house to pay to do so, and I am guilty of imagining him being so much further along, so this article has taken that feeling of guilt away from me and really confirmed what I always knew to be true of my son and our family and the choices we have made.
I understand that everyone is different and has found different ways have worked for them, but this is our success story and I hope that it may be an inspiration to others who just don’t know what to do next.
The books we have found to be the most useful are:
More Than Words from the Hanen program – available directly from Hanen or from Amazon.
Engaging Autism by Stanley Greenspan also available from Amazon.
Simon Bensley wrote on August 13th, 2007 at 7:44 pm:
Nice to read your post, we have a brilliant speech therapist who told us the same thing,like you we had to learn a lot(still learning) and did lots of reading and found the books like Engaging autism and the Floortime book very useful. seems to be the modeling and playing that helps our son along.
we are following the SCERTS program as a overall guide to help us along with our son Sasha and the beauty is you can bring in any type of “therapy” inside this overall approach inside this program, We are very lucky to have a headmaster at our sons school who is fully on board with helping in anyway possible
lesley wrote on August 13th, 2007 at 7:59 pm:
I liked your story Cally,
While my son does go to a couple of therapists each week (an OT and a weekly social skills group) I arrived at a similar place to you with regards to persuing lots of things. I realised that when I am feeling anxious and pressured, this does not help my son one bit. So I decided against several therapeutic options because I could tell I was getting overly worked up about them. Like me, my son is much more responsive when he is not under pressure. He seems to have a psychic sense of when i am trying to get him to do something ‘for his own good’ as opposed to a more natural enjoyment, and he resists accordingly.
I do find there has been a place for getting help from therapists, but I also want to excape the idea that it is all up to me to make things work for him. He seems to take big steps when he is ready.
cally whitham wrote on August 20th, 2007 at 2:14 pm:
I agree with you that there is a place for therapists, I didn’t mean to come across that I wasn’t. What I was trying to say was that too many therapies, or pinning too much hope on therapies curing our son was actually quite stressful to us all.
lesley wrote on August 20th, 2007 at 7:38 pm:
It seems to be a real juggling act engaging with the various therapies that are around while still aiming to remain relaxed and postive. I decided against several things because the thought of them made me feel very stressed about getting it right. I do notice that he seems more relaxed and open when i am.
Jill Taylor wrote on August 22nd, 2007 at 2:08 pm:
I thought I would give the perspective of a parent who has decided to to do ABA. Our son has been doing it for two years, since he was three and a half, and we will probably continue doing it for some years to come. For us it is the best decision we ever made and while I can’t say definitely that he wouldn’t have made the same improvements without ABA our feeling is that it has helped him (and us) greatly.
I think there are lots of misconceptions about ABA and my experience of Special Education speech therapists and early intervention teachers is that their advice on ABA is not that well informed. The early intervention teacher allocated to my son refused to come and observe an ABA session for example but was still quite happy to be negative about it.
We have only ever paid for 10 hours a week of therapy (most families that I know do a similar number of hours), and so is not as intensive as many believe.
Doing ABA and interacting with and supporting our child are not mutually exclusive. As parents we still engage as much as we can with our son, but find that the ABA therapists provide support and advice that we would otherwise be without.
The idea that ABA means a child locked in a room doing countless repetitive drills which he hates every minute of is totally incorrect.
During our ABA sessions our son has playdates, goes shopping and plays with a therapist’s pet dog to name but a few activities. These were all areas that we needed help with - he didn’t interact with other children, going shopping was a nightmare and he was terrified of all dogs.
While he was a bit reluctant initially as he was asked to do things he found hard, our son now really looks forward to the sessions and the therapists are part of our extended family.
The research on ABA is divided, and while you found a study that wasn’t positive about ABA there are many more that are. Ultimately I think it is a really hard area to study as autistic kids are all so different. What I would say to any parent with a newly diagnosed child is to become fully informed on all the options yourself and don’t necessarily be influenced by special education staff who are generally very anti ABA. Instead find some parents and talk to them about what worked.
The real problem is of course that parents get so little support and educational provision for autistic kids is so poor. Your study refers to ABA programmes being compared to ‘autism specific nursery provision’.
If we had been offered autism specific early childhood and school education maybe we wouldn’t have done ABA, but found that there was little alternative.
Andrew wrote on September 3rd, 2007 at 8:06 am:
“Our son is mildly autistic with significant speech/language delays. He is adorable, really happy, low key, loving and intelligent. We are happy to embrace that about him and to let him be him. Without heavy duty expectations placed upon him due to expensive therapies he has been able to constantly surprise us - at his own pace.”
Really nice description. Take out “low key” and you’ve painted a great picture of how I feel about my daughter.
The progress made during her kindergarten years was remarkable. I could put it down to a number of things. A fantastic ESW who lasted the whole 2 years. A great kindy in an old building with high ceilings, plenty of sunlight and room to run around and squeal in. Understanding kindy teachers, accepting of diversity in their class.
However one thing more than any other must be given credit for my daughter’s development: the amazing little girl herself.
Tania wrote on March 30th, 2008 at 9:06 am:
This is very interesting site; I just happened to stumble on it whilst looking for something else. But I may be able to give a very different perspective on the subjects under discussion.
My background is in tutoring in ABA, although on leaving the UK one and a half years ago I felt that I was ready to move into case management. Unfortunately when I arrived in NZ I found that the form of ABA that I preferred wasn’t offered in NZ. So at the moment I am studying and working part-time as a ESW for Group Special Ed. The comments mentioned by Jill about the level of understanding about ABA within Group Special Ed (GSE)are soooo true. I am truly flabbergasted by their ignorance. On beginning my job as a ESW, I was told by the head of the department “we don’t do behaviouralism here”. Behaviourism, of course, is the branch of psychology that developed ABA. This makes me chuckle even now because 90%+ of the interventions used by GSE are pure behaviouralism. Of course, because they do not philosophically believe in behaviouralism, they tend to use some of the techniques poorly!
On the merits of ABA I would say that the outcomes are dependent on two factors - the type of ABA programme and the quality of the tutors. I have worked on both strict Lovas style programmes and a more naturalist style of programme called Verbal Behaviour (VB) and I think that the more naturalistic approach is far superior in numerous ways. I am interested to hear that parents in NZ prefer to do fewer hours, because this wasn’t my experience in England. I am sure that the ABA hard core would probably tell you that this wouldn’t be enough. However, I have effectively been doing ABA within my roll as an ESW and I have found that I can get very good results with as little as 3 hours a week - which is just fantastic!
To summarize, the things I don’t like about some ABA programmes are - No No prompt, tutors who behave as though they are programming machine rather than teaching a human being, excessive table work, programmes that do not use function analysis and a lot of redirection.