Have you got a child who has his or her own agenda?

Tace is 2 and a half. She doesn't look at or seem interested in her parents or anyone else. She loves wheels or anything that spins. She plays alone and likes running around the room. She cannot be persuaded to sit with the others for a story at nursery. She is very independent and shrugs off all attempts to help her. She will reach towards objects she wants. She has no words and will scream when she wants something.

Tace is a child at the 'Own Agenda stage' according to Hanen. Not all children will go through this phase but for parents of children who do, it is extremely frustrating and worrying.

Tace does not realise that she can affect other people so her communication is mostly at a pre-intentional stage.We can tell what she's feeling by looking at her body movements, smiles, gestures and screams. She has been referred to the paediatrician.

So what can we do about it? Most parents just want the child to talk, after all that's what they should be doing at this age, surely? However, the goal of talking is a long way off for Tace. We need to get the background factors in place first so we can move the child from this stage to the next. In Hanen terms, this would be 'the requester stage' which we'll look at next month.

The initial goals for a child at this very early stage of communication development are to increase the child's attention/interaction with you and to increase the understanding of activities. I know that sounds too simple but it is vitally important to pick the right targets or we won't be successful.

With Tace, therefore, we looked at activities which she enjoys and turned them into games with her mother. She loves spinning so we put her in a spinner chair. We started the activity each time with, 'Shall we spin?', then we spun her a few times before stopping. She laughed and moved her whole body to show she enjoyed it. To begin with she didn't realise she could make it happen again. Then when her mother said, 'shall we spin?', and waited a little, she moved her body and her mother began the game again. Her mother had added meaning to the body movement and interpreted that it meant she was to do it again. This happened a few times before Tace realised that by moving her body she could get her mother to repeat the activity. She now regularly 'communicates' to her mother that she wants to do it again. She realises that the chair coming out means its going to happen and shows excitement when she sees it. She is also looking at her mother as another indication that she wants the game to start.

Tace's mother made it fun by using facial expressions and fun noises.

They are now generalising this ability with other games e.g. spinning her around or singing with action e.g. 'Row, row your boat'. She will soon be moving on to being an early communicator i.e. she sees that her actions can have an effect on someone else.

Tace's mother didn't see the point of my suggestions at first. 'What has this got to do with talking?' she might have asked. 'That's pretty crap!' she actually said!! As speech and language therapists we need to be able to look at a child and work out where we are and what the next step is.  It can seem a world away from 'speech therapy' but it's essential we identify the right level so we can suggest the right way forwards.So please bear with us if what we say isn't what you want to hear. The whole process of communication is very complex and it's our job to un-pick it. Tace's Mum now says, 'I thought Libby was mad at first. She was very nice but wasn't saying what I wanted to hear. Fortunately, she convinced me to try and showed me the stages of communication we'd need to work through. I feel like we're getting somewhere now. I still hope that one day she'll talk.'

If you have a child like Tace, try using his/her interests to make simple games. Whether that's spinning like Tace or flapping, flicking, jumping..... make a game out of it so you can start the process of communication today.

www.hanen.org

Are children being mis-diagnosed with ASD?

Anyone who knows me well will acknowledge that I get very cross when children are labelled as 'autistic' without a thorough multi-disciplinary assessment. One of the reasons for this, is that there are other issues which lead to children not communicating or not wanting to interact. A language related problem may be the reason or even a delay in all the child's abilities. It was with interest, therefore, that I read about an American study which showed a high incidence of mis-diagnosis in children who were born prematurely as it backs up my idea of gaining ALL the facts before giving the child what is after all, a label for life.


Researchers, led by pediatrician Bonnie E. Stephens, MD, FAAP, and assistant professor of pediatrics at Brown University’s Alpert School of Medicine, hypothesised that many formerly premature infants who screen positive for ASD at 18 months do not have ASD but are having failing scores due to a cognitive or language delay, which is common in 18-month-olds who have been born very prematurely.


For the study, researchers sought to determine the rate of false-positive screens for ASD taken at 18 and 30 months of age and to determine the connection between a positive screen and cognitive and language delay.Stephens and her colleagues are hoping to get funding to support a multi centre study that would include more than 500 children. “This will allow us to determine the true rate of ASD in this population, the rate of false-positive screens at 18 and 30 months, the optimal time to screen, and the optimal ASD screening tool for the extremely preterm population".


Hopefully, this will persuade professionals here to look at the wider factors involved. I want early diagnosis but I want accurate labelling!

Related articles

• Vital Signs: Screening: An Autism Questionnaire at Checkup Time (nytimes.com)
• Screening very preterm infants for autism at 18 months often inaccurate (scienceblog.com)
• Screening very preterm infants for autism at 18 months often inaccurate (medicalxpress.com)
• Screening very preterm infants for autism at 18 months often inaccurate (worldscientists.wordpress.com)
• Autism Tests for Preemies May Be Faulty, Study Suggests (nlm.nih.gov)
• Autism checklist spots warning signs in infants (cbc.ca)
• New Autism Screen for Babies (blogs.wsj.com)
• Autism checklist: What every parent must know (cbsnews.com)
• Screening very preterm infants for autism at 18 months often inaccurate (eurekalert.org)

Autism diagnosis helped by speech screen

A  device may be able to automatically screen young children for autism based on how they talk, U.S. researchers say. The small recorder fits into a child's pocket and analyzes the words the child says during the day, and a software program evaluates how the child makes certain sounds.

A team of researchers led by Kimbrough Oller of the University of Memphis analyzed more than 3 million syllabic utterances, collected from almost 1,500 all-day recordings from 232 children aged 10 months to 4 years.

The program correctly identified an existing autism diagnosis 86 percent of the time. The analysis also predicted the age of a typically developing child, said the study published in the journal Proceedings of the National Academy of Sciences.

"Although clinicians have been saying for many years that they think that autistic kids sound strange when they talk, there's been no practical way to use vocalization as a part of the diagnostic or screening procedure in working with autism," said Oller, professor of audiology and speech-language pathology.

Oller identified the speech patterns the device analyzes and helped develop the screening method.

The tests were conducted in English, but Oller said the technique may apply to other languages. "It hasn't actually been tried yet, but there's every reason to think it should," he said.

Doctors now diagnose autism by testing children for a range of behavioral and speech issues including how much they talk by a certain age and whether they make eye contact with other people.

"Autism is a multi-factoral disorder and it has many behavioral dimensions to consider. And vocalization is clearly an important one," said Oller. "But I certainly don't think it should be used exclusively."

Oller, who studies language learning and language evolution, has identified how the formation of different syllables changes during a child's first four years.

Instead of saying "ba" as part of a longer word, for instance, a young child might at first say "ba-a," with "sort of a staccato or tremor kind of pattern," said Oller. The speech development of autistic children does not follow those typical patterns, the analysis shows.

The software distinguishes among speakers and processes sounds made only by the child being studied. The day-length recordings enable the researchers to examine a child's natural speech.

Parents send the recorder back to the company after the child has worn it for a day and the company analyzes the recording for language development progress and autism.

Infoture Inc developed the device and the software. The company dissolved in February 2009 and was reconstituted as the LENA Foundation, a not-for-profit organization, which continues to fund the research. The foundation sells the device along with clothing with a pocket to hold the recorder.

Oller received consultation fees from Infoture before it dissolved and several of the other researchers are employees of the LENA Foundation.

Source: http://uk.reuters.com/article/idUKTRE66I4UN20100719

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ASD can be easy to miss or dismiss:

In a week, during which I've had to be the bringer of bad news to two families, I thought that the following article from the BBC was worth sharing. Parents often ignore the signs, even if they are well educated and, in this case, should have known. It's very common and very understandable that they often choose to push their fears to the back of their minds in the vain hope that it might be OK, that miraculously their child will be 'normal'. It's also very hard for professionals to be the first one to discuss the problem. I would never mention autism, only the speech, language and functional communication issues but this has become easier with time, experience and age perhaps, as I find I'm older than the parents now.


I admire the GP in this tale, who has admitted what many would have kept quiet. I hope it will have a happy ending too!

Even a GP can miss her son's autism By Jane Elliott  BBC News Health reporter 

When Dr Sylvia Bond's son James was slow to speak she worried about his development.She decided to have his hearing checked, but what the GP of eight years - and practice lead in child health services with a diploma in child health - did not expect to hear was that her little boy was autistic.
Just after his third birthday, however, that is the diagnosis she was given.
Despite her experience she had missed all the signs and says it showed her just how easy it can be for the professionals as well as lay people to miss the subtle signals.
Unlike many autistic children James was affectionate to his family and a very happy little boy.
And although he had no proper speech by the age of two his mother was sure there was another explanation.
Tell-tale signs
It is very difficult to put a date on when I first noticed there was a problem, she admits.

“ If I had not been a GP I would have probably taken him to the doctor sooner. ”
Dr Sylvia Bond

"He was not speaking. I think he might have said dog and duck once, but a trip back to the park to see if he would say them again had no response."And he never pointed at anything.
"He did not develop speech and he was a child who did not understand speech. I thought he could understand the word 'no', but he just understood the tone of voice that I used.
"He did understood the word 'pop' as in ice pop.
"I did not see the lack of eye contact, you don't when your child is cuddled into you. It takes someone else to discover it.
"As a parent you know something is wrong, but you do not know what.
"If I had not been a GP I would have probably taken him to the doctor sooner.
"If I had not been a doctor I would have asked for him to go for speech and language therapy."
So she referred him to an audiologist.
"I thought he had a hearing problem.
"I referred him myself to the hearing clinic as I was aware there were waiting lists for the speech therapists.
"I thought he needed intensive speech therapy."
Solo play
Dr Bond, a GP in Romford, Essex, said James would sit for hours playing happily with his Thomas the Tank Engine babbling to it in make-up speech like Star Trek's Klingon.

He could do complicated jigsaws and soaked up hours of television, but was unable to respond to his name.To him 'James' was merely Thomas' red friend, the number five engine.

The audiologist confirmed that James was able to hear and referred him to the community paediatricians, who highlighted his high intelligence levels, total lack of language and mixed social skills.
Dr Bond became aware that James might be autistic, although there was still no official diagnosis.
"Despite being a GP my experience was of children who are extremely autistic, whereas James is at the mild end of the spectrum.
"But these are the children for whom an early diagnosis can be most useful."
Home help
While waiting for his diagnosis James was signed up for the home tuition service for pre-school children (known as portage) and speech and language therapy (salt).
Dr Bond was taught how to communicate with James without the use of verbal language through symbols and signs.
His final diagnosis was made after he was observed not reacting in the assessment centre when another child hit him.
James, at the age of three, learned to read, say and then finally understand words - in the way in which someone might learn a foreign language.
Now aged six his reading and writing are above average.
He is in a mainstream school and he shows academic potential.
And as a high-functioning autistic boy there is every hope that James will go on to have a very successful academic life.
Struggle
But as his mother explains it has been and still often is a struggle as it is difficult to keep him focussed and he needs his full-time teaching assistant support on a one-to-one basis.
"As he started getting older I noticed other signs of autistic behaviour. Loud noises would upset him.
"He loves salt and certain foods, but is also very finicky about eating foods with certain colours or tastes and will not wear silky type clothing because it distracts him.
"He has had to have the labels cut out of his clothes because they distract him, but as he has grown older he is becoming more tolerant."
James now has a gluten/casein-free diet and takes omega 3/6 oil supplements.
If they stick to this they have a happier and calmer child.
But even the smallest diet changes can leave him distracted and obsessive and waking at 3am.
Social side
Although lessons are rarely a problem for James the social side of school sometimes is.
He often finds it difficult to interact and play time and lunch time can still be a bit of a struggle for him, so he only has three school lunches each week.
But Dr Bond says James' problems have made her much more sensitive to autism and she can now make a diagnosis in ten minutes, although she would always refer a patient for a full assessment.
She also tells affected families about James as she hopes she can help them relate to the problems.
Diagnosis vital
A spokesman for the National Autistic Society (NAS) said that a speedy diagnosis often made a big difference to the help and support a child could receive.
"Once a child is diagnosed it's desirable to access an early intervention programme as this will help the child and the whole family.
"There is no cure for autism it is a lifelong condition.
"However, there are various interventions or therapies available that can make a real difference and help the person achieve his or her full potential.
"There is evidence to suggest that intensive early intervention can result in a positive outcome for some children with autism."
The NAS said that the first port of call for parents worried about a child was the local GP, who they could ask to refer their child to a local diagnostic and assessment expert like a paediatrician, clinical psychologist or child development team.
But they said that there was still a 'widespread lack of understanding' about autism among professionals who often missed the signs and they called for better training into the condition.
In a 2002 NAS survey 'GPs on Autism', four out of ten GPs said they didn't have sufficient information to make an informed assessment about the likelihood of a patient having an autistic spectrum disorder.
Over one in eight said they would not know how and where to refer a patient with autistic spectrum disorder.Story from BBC NEWS:http://news.bbc.co.uk/go/pr/fr/-/1/hi/health/3937493.stm Published: 2005/01/05 15:08:12 GMT 

© BBC MMX

If you have any concerns about your child, Small Talk Speech & Language Therapy have 3 Specialist SLTs www.private-speech-therapy.co.uk. We Can offer assessment of language & communication skills or provide a full assessment and diagnosis service in conjunction with an expert clinical psychologist.

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