TRACY HOLLIDAY tells how local councils refuse to pay for an intensive process that has radically improved her daughter’s behaviour.

 

When interior designer Tracy Holliday was told that her daughter Freya was autistic, she wasn’t surprised.

What did astound her was the lack of support available for her child. “Freya, who has a twin Chloe, was different from the start,” recalls Tracy, 43. “She was difficult to settle and found it hard to sleep.”

However it wasn’t until she was about 16 months old that Tracy really started to worry. By then Chloe was walking and starting to talk but Freya, now four, was failing to meet her milestones. She didn’t make eye contact or show any interest in her toys.

Freya suffered from glue ear and severe reflux and Tracy hoped it was her physical problems that were holding her back. “Deep down though I knew she had autism,” she says.

Her fears were confirmed when Freya was officially diagnosed 18 months ago by a psychiatrist and a paediatrician. At the time she didn’t recognise her name or understand any sort of command, and at times her behaviour was so challenging it made it very difficult for Tracy to take the girls out.

She admits she found the diagnosis devastating as she knew having autism would make Freya’s life hard.

But instead of being given advice and support, Freya was put on a waiting list for occupational therapy and speech and language therapy. The local authority couldn’t even offer her a place at a specialist nursery.

Autism affects an estimated 700,000 people in the UK and costs £32billion a year, more than any other medical condition and greater than the cost of cancer, strokes and heart disease combined, according to an economic analysis of the condition’s impact.

That figure includes the costs of medical care, productivity loss and lifelong residential accommodation (up to £200,000 a year) where many young autistic adults end up when they are too big and too aggressive to be cared for at home.

Tracy was told by a private speech therapist that Freya had no idea about communication and that the gap between her and her peers would only widen if they didn’t intervene.

Feeling alone and frustrated, Tracy and husband Andrew, 43, a sales manager, got in touch with other parents of children with autism. Over and over again they were told to try applied behaviour analysis (ABA), a therapy which uses a system of rewards to change children’s behaviour and teach them new skills. It is commonly used in America, Australia and Europe but much less so in the UK.

There was just one problem: local authorities in the UK often refuse to fund ABA unless there is concrete proof it is making a difference. Believing that early intervention was crucial, Tracy and Andrew used an inheritance to fund a 30-hour-a-week, six-month course of one-to-one ABA therapy for Freya at a cost of £540 a week.

She now has three ABA tutors who have devised an individual programme specially designed for her and having proved that it is effective, her ABA is part funded by the local education authority.

ABA is centred around the use of rewards or “reinforcers” for good behaviour, social development and learning. “It is an applied science, not specifically a treatment for autism,” explains Freya’s consultant Dr Francesca degli Espinosa. “It is all about changing the variables of behaviour by using individual motivations.”

The first thing Freya’s team did was to focus on changing her anti-social behaviour by improving her communication skills.

“Freya loves the trampoline so a lot of her therapy is done on that,” says Tracy. “When she bounces her tutor will say the word ‘bounce’ over and over again until she understands what it means.”

Her other rewards are time on an iPad which she has mastered to a surprising degree and food which she loves.

Freya still does not talk but she has learnt sign language and is starting to sound out letters. She will now sit and play interactive games on the iPad with sister Chloe and even knows how to take turns.

“The fact she now makes eye contact and can express what she wants is absolutely amazing,” says Tracy. Next January Freya will start reception alongside her ABA tutors in a mainstream school.

However some autism specialists have likened ABA to “dog-training”, and have even accused parents of trying to “normalise” their children.

“This is a throwback to the 1970s when ABA was first used with children with autism and it could be quite punitive,” says Dr degli Espinosa. “Some people still believe that it is forcing children into compliance when this couldn’t be further from the truth. It is not about stripping them of autistic traits, it is about helping them to function in a non-autistic world.”

Nevertheless ABA is still not widely endorsed in this country.

“We are about 30 years behind America where it is used as standard,” says former investment banker Jane McCready whose 11-year-old son Johnny has been using ABA for the past seven years.

Jane is so convinced of the effectiveness of ABA that she has set up a group called ABA4All which is campaigning for the therapy to be available to all children who need it.

In January 120 mothers put in £10 each to crowd-fund a legal opinion on their case for a judicial review of autism treatments provided by the state. They have been told they have a strong case.

“When Johnny was three I was told by a speech and language therapist that he would never talk,” adds Jane. “It was implied that children like Johnny weren’t worth educating.”

Prior to this Johnny had been receiving TEACCH, a type of educational intervention that places emphasis on structured learning by using visual prompts such as picture cards.

It is widely used in this country but proved to be ineffective for Johnny. In contrast, after three weeks on ABA, he was saying his first words and within a month was potty trained.

“A lot of ABA is about teaching the child to imitate. I remember Johnny being pushed higher every time he tried to say the word swing.

“It has cost me about £50,000 for two years until I managed to get state funding but it was worth it,” says Jane, who is also mum to 13-year-old Marina. “Every autistic child should have the same opportunity.”

Johnny now talks and he is in a specialist ABA school. “The world has completely opened up to us,” says Jane, 50.

ABA tutors are highly trained and specialised. Surprisingly research revealed that only five per cent of mainstream teachers have any training in autism.

“They become nothing more than babysitters,” says Jane. “I think it is scandalous that there is so little intervention. Some of these kids get to 12 and they are still in nappies and unable to speak.”

The National Autistic Society (NAS) refuses to promote ABA however. “A variety of interventions and therapies have been developed over the years which have all made competing claims for effectiveness,” says Carol Povey of the NAS Centre for Autism.

“The NAS does not advocate one therapeutic approach over another because each person with autism has different needs, preferences, talents and personalities. Similarly they will respond to different approaches at different times in their lives.”

For parents like Tracy however there is no doubt that ABA has had a life-changing effect. “Freya is so much happier now and she is slowly letting us into her world,” she says.

“We can go to parties and to the park without worrying about her behaviour which is an unbelievable breakthrough. I just want to give my daughter the chance to get the best out of life and with ABA I think we have found a way.

For more on the campaign visit facebook.com/ABAforallchildren

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Reposted from http://www.express.co.uk/life-style/life/490359/applied-behaviour-analysis-helped-daughters-autism