Saturday, June 16, 2007

clutching at straws, ABA for ASD; first posted on 24th March 2007

Hi there,
Thought I might share a little analogy from the wonderful world of living with Autistic Spectrum Disorders
As you have gathered by now, I have two children with Severe Autism, my son is 9 and my daughter 7. My son bit another child (at school) on Friday, while I was marching in front of the Four Courts, for the 5th time in 2 years, He bites himself all the time, despite my repeated requests for a behavioural analysis and treatment plan. And now my Darling Daughter has just spent the last half hour beating the hell out of me.
Why? Because the company that makes the apple drink in a box that is (the only thing she will drink) have changed the color of the straw in their packaging. And she won't have it. On Friday we stocked up with our usual supply of 3 trays x of 9 boxes of 3 packs, half of which had the new straw. By Saturday the boxes with the old pink straw had run out, but we had loads with the new green ones.

She is functionally non-verbal, but last night she decided the best way to get us to go and buy new juices was to systematically open all the ones with a green straw and arrange them on the kitchen table, without drinking one.
I discovered her on about the 15th carton. Stopped her and put her to bed with the last, pink straw carton.I then hid all the remaining green straw cartons and went to bed myself.This morning she began demanding "Drink" and "Shop" vocally and with her picture exchange system; to get us to go and buy new juice. I
I refused. She then used her picture exchange system to day she wanted to walk to shop for Ice cream. She also put in a verbal "ice cream" for good measure. The freezer is full of her favourite ice creams, so she was using a picture of a cornetto which we don't have. She was using the picture exchange system to Lie, and they tell me this girl has a learning disability. I still refused.

She then started to beat me up. Down stairs I could hear my husband get his keys and go out the door, then I heard the car. Darling daughter continued to scream (she is an ear splitter) and actually thump me. Car returns 15 minutes later, with my husband and another four trays of juices, all slightly torn open to expose the pink straw.

So yes, we would rather drive around the county supermarkets looking for juice with the old packaging, than stand up to a 7 year old who weighs less than 20 kilos, wringing wet.

There is a programme we could do, called "saying No" which is taught by ABA specialists in schools here and in the USA., but it requires the commitment of a dedicated team of trained therapists to work with the family and ride out the tantrums until the child has the ability to accept no, and accept an alternative to their preferred option.
As you have probably guessed the educational and health services available to me in the last 5 years have not had that level of expertise. On Friday a judge (who obviously had never been beaten up by a 7 year old) ruled against one family who just wanted the chance to ensure that their son was educated in an environment where otherwise lovely little boys did not bite chunks out of their school friends, and little girls learnt to understand the word no, without assaulting anyone.

A good saying no programme takes a few weeks to plan, to observe and record data, to see what comes before the inappropriate behaviour and come up with techniques to replace the behaviour with something acceptable. It takes about 4 weeks to implement in both the educational setting, with weekly home visits and a daily session with the parents to ensure they maintain the programmes integrity. But once it has been achieved, the child will permanently have the ability to cope with change; and be tolerant of other people's interests and needs, in other words; be part of normal family life. So, to stretch the analogy, With a little bit of planning and co-operation, The Special Education Needs services (Dept of Ed and Health) could recognise and support the existing ABA schools in this country and set out to expand and establish full service ABA units in every county, including within the existing TEACCH or "ECLECTIC" units. Yes, it would take a little bit of getting used to, people would have to accept change in the way they work, they would have to re-train, maybe open up and listen to people with expertise in fields that they don't really understand. A little bit like getting used to new packaging of a product if you like, but the outcome to Thousands of Children and Young Adults with Autism and their families would be immeasurable.

Instead of minding, restraining, then isolating and eventually sedating an intelligent human being whose only coping strategy to the condition of autism was to look for sameness and consistency in their environment, they could actually commit a finite amount of time and resources to giving them the ability to cope with change and move on to acquiring the next skill for independent living.Finite because once the resources to provide 30 hours a week of Applied Analysis and Intervention are well, applied, the overall level of skill of all concerned is improved and the child or young adult needs less help.
But when you don't commit these resources, or you fund alternative, non evidence based ineffective "Band Aid" solutions, like full time care staff and restraining devices, then you actually perpetuate the problem, for the term of the individuals natural life. So, Ministers for Ed, Children and Health,, "Do you think you can get used to some Green Straws?"

1 comment:

Jean said...

I love this post. You really ought to write a guide book for parents y'know...I know people say that all the time, but I mean it XXX