I would love to hear from other ABA autistic mums!

29 Jun

I would love to get ABA principles into all our autistic schools and units in the UK – even if only a few basic priniples, such as motivating them to talk more or getting rid of challenging behaviours. If anyone would like to join my campaign?

Why should children with autism in the UK get second best, compared to those in the US?

 

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How my autistic boy learned to talk via ABA

29 Jun
Just another http://www.mumsnet.com weblog
Two very personal articles telling how ABA helped (where everything else failed) my autistic boy – posted on April 16 2011 at 7:39 am by sickofsocalledexperts

How the UK mismanages autism – a parent’s view

In SEN magazine last month, a noted behavioural  expert Brad Bezilla said that the UK seems to be lagging behind the US when it comes to using ABA (applied behavioural analysis) to manage autistic children’s behaviour.

It’s far worse than “lagging behind”, Brad.  I have stopped counting the number of professionals who have actually tried to put me off using ABA for my autistic boy – even as I tell them how well it works for him. Or who have point blank refused to fund it. Or the horrified looks on the faces of Local Authority ( LA) bods when I mention that I am using ABA . You’d think I’d just confessed to using witchcraft!

It’s very odd. I can only assume that, somewhere along the line, a memo went around to all LA education departments, and especially speech and language therapists ( SALTs), saying something like: “ABA is the devil’s work –  please endeavour to nip any attempts at ABA on the part of deluded parents in the bud very quickly. Tell them that the speech it purports to give their child is not “real” speech, is simply robotic and rote- learned. Tell  them that it will “disrupt family life “ (actually, not as much as an aggressive, unmanaged autistic child will, thanks); tell them that it will create too  much rigidity in your child, and all that he learns will simply be “grafted on”, not properly, intrinsically learned.”

For a while I believed all the above. Until I met a mother who had actually used ABA, and who absolutely refused to let me trot out my LA-inspired  nonsense,  but told me that her boy had only started to speak after work with ABA tutors, and that his bad behaviours and stims (self stimulatory behaviours, eg hand flapping)  had been immeasurably improved under ABA.  Luckily, I went with her not the LA.

The problem is that the state “industry” around autism is brainwashed into hating ABA, and has only its pet (and wholly unproven) education systems of TEACCH, PECs and visual timetables to offer.

I would like one day to do a survey of the speech and language reports being given out daily to autistic children by SALTs employed by local authorities. I am willing to bet quite a lot of cash that every single report contains the following 4 recommendations – “the child needs a low stimulus environment” ; “the child needs to use PECs or Makaton”; “the child needs a TEACCH learning approach ; “the child  needs a visual timetable” . I spent thousands on a much-lauded pre school autistic nursery which specialised in all of the above – my son got worse, not better.  Yet 3 weeks after starting ABA , his speech and his behaviours were 80% improved. And the same has happened for very many of my pals.

The truth is that no-one is measuring how very ineffective our state autism provision actually is – probably on the basis that “those little kiddies will never amount to much, it’s not even worth measuring their progress as there’ll never be any”.  As a parent, it makes me want to scream.  My boy would have been written  off –  aged 3 –  as a no-hoper, had I not found an alternative education for him.  I could weep for all those hundreds of autistic 3 year olds being written off across the UK every day of the week.  Kids who will never  speak, or read, or write, or live an independent life,  because the state has such low expectations of them.

Every single autistic child seems to be getting the same generic recommendations – yet every autistic child is an individual, something which our LAs ought to agree with as it’s enshrined in law in this country.  A one-size-fits-all approach, such as is being used with this constant flinging at parents of visual timetables and  Makaton, with zero behavioural advice, is a scandal.

Here is an example which sums up for me the flabby, unexamined doctrines which govern how our so-called professionals in the world of autism operate in this country.

My 10 year old boy is in a school which very much espouses ABA methods. But occasionally a state SALT turns up to see him and puts in a report.

When one recently saw my boy, he was going through a phase of coat-refusing – even in the pouring rain.  He has known what the phrase “put your coat on” means since he was 2 years old. But at this particular time, he was disobeying as he’d gone off coats. A behavioural issue, in other words. The speech therapist cruises in and recommends that his teacher show him a picture of a coat. This would, apparently, do the trick.

Then she ambles off again and, since SALTs  never seem to visit more than once in a blue moon, she would rarely if ever be called on the fact that her recommendation was nonsense and didn’t tackle the actual, behavioural problem.

In a way, it’s not even the SALTs’ fault really. The LA puts them in an impossible position by using them as overall autism experts, whereas really they are speech and language experts.  (And actually I would argue they are often not even very well-equipped to judge the particular speech and language deficits of  autism, or verbal dyspraxia, as their training seems mainly to have focussed on “normal” kids with speech delays/problems).  Very few LAs (Southampton being an honourable exception) employ behavioural  specialists on the ground,  yet often that’s the area where parents need most help. Expecting SALTs to pick up the overall autism brief is unfair on them, and ineffective for us parents.

I can remember similarly at the school my boy attended, asking the staff what’s the point of showing him a picture of a toilet, when he understands perfectly the words “time to go to the toilet”. The teacher thought for a while, then replied:  “it solidifies the idea better in his brain, as he’s a visual learner.”

It’s poppycock, but these truisms are being trotted out to unsuspecting mums across the country every day. And ABA – which actually gets around the problems an autistic child has with the motivation to talk, and which tackles head-on the behaviours and stims  which get in the way of their learning anything , is rejected wholesale by the system.

My favourite example of the differences between TEACCH and ABA is as follows. When aged 2, my boy had a bad habit of playing constantly with his willy. It needed to be tackled, as it wouldn’t look good at age 25.

The TEACCH recommendation: put him in dungarees. What, for ever, I asked?  They had no answer, they were simply sidestepping the issue.

The ABA approach:  every single time he put his hand in his trousers, remove it firmly but gently, say “no” and redirect him to another activity. Continue until the reward he got from the willy-handling was superseded by the irritation of being constantly stopped. In other words, tackle  the bad habit head-on, at an age where his habits can be changed.  He doesn’t do it any more (at least not in public), which is a pretty important win now he’s a big sturdy boy of 10, in a mixed school.

I am writing to everyone I can in government to suggest a solution.  It wouldn’t actually be difficult or expensive to introduce some basic behavioural principles into our existing autistic infrastructure.  A simple ABA training program for the hundreds of staff employed in our shiny, well-equipped autism units and special schools would be enough to have a huge effect on outcomes for many autistic children.

And if we start turning out better-socialised, better behaved autistic adults, isn’t that good for society as a whole, let alone for us poor parents?

Aggression can be a huge problem with autistic children. A bit like domestic abuse, parents are often too ashamed to admit that behind closed doors they are getting beaten up daily by their teenage ASD or aspergers sons. Those boys usually end up in (expensive for the state) institutional care, when the parents finally admit they can’t cope.

My boy used to hit, bite, and headbutt  me when he was aged 2. The TEACCH approach, in a state-approved autism school?   Praise him when he’s not hitting you.

Now you don’t have to be Einstein to realise that this sophisticated double-negative is not going to work for a toddler, let alone a non-verbal toddler.  The ABA approach?  Say no crossly every time he hits, hold his hands together firmly,  put him instantly in another room and close the door for 5 minutes. Repeat for every single incident of violence until he gets the behavioural message. Show him there’s zero tolerance for violence. At an age when he can still change.

Actually, I can think of a fair few “normal” children who would have benefited from behavioural interventions like this in the early  years, to prevent  their aggression getting out of hand.   For ABA, often you could just read “proper parenting” or “putting the adults back in control”. A lot of it is just common sense.

But under TEACCH, and with the woolly, patronising ethos which pervades our SEN education system, I’d now be getting punched, not hit, by my sweet boy. So why is no-one listening? Why do they hate ABA so much?

Please someone, send out a new memo.

 

A mum (who’d prefer to remain anonymous now she’s outed herself in the UK as an ABA-er!)

 

 

 

View from a Mum

Why SALT  (speech and language therapy) isn’t working for Autism

As mum to an autistic boy who has had a slow and painful journey towards language, I wanted to share my story with mumsnetters.

When my son Robbie was first diagnosed with autism at the age of two, we employed an NHS SALT who specialised in autism.

She came to our home privately (£75 an hour) once a week for six months. She prioritised what she called the ‘pragmatics of language’. We played with noisy toys and bubbles with the aims of promoting eye contact, non-verbal initiation, and turn-taking. She introduced PECS, but although he quickly grasped the concept of handing over the right card for the right item, he never made one sound.

In retrospect I suspect she had missed out a key component of PECs: the reinforcement of speech. But it occurred to me early on that producing speech was very difficult for him.

The SALT gently suggested that he’d probably never talk. PECs, Makaton and visual timetables were her main recommendations. Ultimately, she and I parted company. I wasn’t ready to give up on Robbie being able to talk.

I felt that the SALT failed to take into account three key deficits affecting my son’s communication: first, as he’s autistic, he had no “social desire to please”, so it was going to take more than just “being a good boy for teacher” to motivate him to speak;  second, like some autistic children he has an additional diagnosis of verbal dyspraxia, meaning actually forming speech sounds is so difficult he avoids it if it at all possible ; and lastly, his autism meant he had very poor imitation skills.

After the SALT left, we enrolled Robbie for eighteen months in a TEACCH school, with regular SALT input. It was nice, but again no progress was made on speech or behaviours.  My observation was that TEACCH worked best for children already at the high functioning end of the spectrum.

Just after starting the TEACCH school, which was only part-time, another mother recommended ABA.  An ABA supervisor (£35 an hour) and tutor (£15 an hour) started working with Robbie in the afternoons, at home.  Here’s what they did:

First, they “paired” with my boy. They established themselves as fun people to be with, ready to take him to the swings or park – his absolute favourite places.  They called activities which motivated him “reinforcers”.

Then they started work on his non-existent imitation skills. They would say “Do this, Robbie” and clap their hands. Then immediately they would hand-over-hand prompt his little hands to clap. For this he would get massive reinforcement (in his case, a crisp or sweet worked best). The sweets though were paired up with lots of praise and cries of “good boy”, so that we could quickly fade out the food and rely solely on social praise.

Eventually, they were able to stop the hand­­-over-hand prompts when he began to understand and respond to verbal instruction alone. They moved onto gross and fine motor imitations – raising arms, hopping , pinching  finger and thumb together etc.

After just 3 weeks of ABA therapy,  he knew that “do this” meant “do what I am doing”.  What Robbie loved above all was being pushed on the swing.  So one sunny August day they said “Do this Robbie – puh” – making a “puh” sound. He tried to imitate it, poorly at first of course, but even a vague attempt at a P sound got him a reward – a huge push on the swing and loads of excited smiles and praise.

This technique was used for other sounds like “c” for crisps, “s”  for sweets, then gradually extended to whole words and phrases, like ‘push me’. He was taught to say “open” to get into his toy cupboard. Then “open” for doors, packets of crisps, presents etc. This ensured the skills he was learning generalised across different settings and people.

ABA therapists refer to such language as ‘mands’. As SALTs, you call it ‘requesting’. For me they were simply Robbie’s first words.

So that dealt with issues of motivation and imitation. The verbal dyspraxia was addressed by months of painstaking work getting Robbie to model and shape sounds in front of a mirror or the tutor’s own face. His efforts were met with different reinforcers as he moved from sounds to words and phrases. Work on these vocal imitation skills (known as “echoics”) made a massive difference to his clarity.

Now he’s  10, he has literally thousands of words and an increasing repertoire of phrases. He can make his needs known and even participate in simple conversations.

He is now very clear in his preferences – particularly where he wants to go and what he wants to eat (“I want to go home” “fishfingers and ketchup”)!

ABA has effectively taught Robbie how to learn – not just language, but also reading,  writing , numbers, computer work – all have been taught using ABA techniques.

I regularly share my story with other mums, who have had equally good results from ABA  – some with quite stunning outcomes. Yet to my dismay, I have met nothing but disapproval and discouragement from health and education professionals.

They say, in dark tones, that ABA will “destroy family life”; that it is “very intensive” (subtext: what a cruel mum I must be to put my son through all this). I have been told that ABA will never be funded, despite its good results. I am treated almost like a cult member – as if the ABA tutors have brainwashed me and Robbie’s progress is just in my imagination despite the fact that we have the data to prove that these changes have taken place.

The stark contrast between what I had been told and what I had seen with my own son was difficult to reconcile, so I did some research.  I found that there is a vast body of research – spanning four decades – which documents the effectiveness of ABA for autistic children.

A number of systematic reviews of evidence-based practices in autism conclude that input of the sort my son received has the strongest evidence base of any comprehensive intervention (Eldevik et al, 2010; Rogers, 2008).

Indeed the RCSLT  (Royal College of Speech and Language Therapists)  itself endorses ABA for children with autism (see Resource Manual for Commissioning and Planning Services for Speech Language and Communication Needs).

Searching the website NHS Evidence brought up over 500 references to the efficacy of ABA-based interventions.

So why, despite the current emphasis on ‘evidence-based practice’ within the NHS, are so many SALTs dismissing ABA out of hand?

And why are we not looking to the US and Canada, where ABA is more mainstream for autistic children, so that companies like Microsoft even fund it in their employee health benefits?

I genuinely don’t understand why we are so virulently anti ABA in this country, when I have seen such life-changing results for Robbie and others; any comments from your readers would be most welcome.

Author has asked to remain anonymous.  Names have been changed.

 

 

References

Eldevik, S., Hastings, R.P., Hughes, J. C., Jahr, E., Eikeseth, S., & Cross, S. (2009). Early behavioural Intervention for children with Intellectual Disability. Journal of Child and Adolescent Psychology 38 (3) 439-450.

NHS Evidence http://www.evidence.nhs.uk/default.aspx

Rogers, S.J., & Vismara, L.A. (2008). Evidence-based comprehensive treatments for early autism. Journal of Clinical Child and Adolescent Psychology, 37, 8-38.

Royal College of Speech and Language Therapists. Resource Manual for Commissioning and Planning Services for SLCN  http://www.rcslt.org/

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29 Jun

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