We are all too familiar with the incredible geographical disparity in services available to people with autism across the UK; the post code lottery as we call it.  The situation in Ireland and the rest of the EU is no different. All too often those in charge of education, health, and other support services have in mind their immediate financial budget and very rarely is there any foresight of the years lying ahead. Our children should not be caught in political decisions and there is no saving to be made in compromising the quality of education they deserve, irrespectively of their ability or disability. The fact is that early intensive intervention in autism offers a much better outcome than classic autism teaching. The fact is that autism requires a special intensity and a very informed and efficacious teaching approach to teach the many skills our children require to learn.

The situations we are facing in this current economic climate is getting worse by the day. Cuts in benefits are being made as well as cuts in provision.

Ireland used to be a model of excellence as far as autism intervention is concerned, from diagnosis services to good educational provisions. However, sadly, the last ABA school opened in the country has now closed. One of our parents living in Ireland is campaigning to keep this lcoal school opened and has initiated a petition. Please support this action by signing the petition and sharing with others.

THE LAST school in the State providing specialist Applied Behavioural Analysis (ABA) education to children with Autism has closed, despite promises from Ministers Eamon Gilmore, Ruairí Quinn and James Reilly when in opposition, that they would support ABA Education. Jack and his seven friends are now without a school, Please Please show you care for these children. If we get enough signatures, surely we can help to get this school re-opened. Thank You.

Tutors working with ATT families welcomed to attend- Free

Monday 7^th of November 7:30-9pm

Risca Solomon: “Manding”- What it is, why it is important and how to increase it?

Monday 12^th Dec 6:30-8pm

Lorene Amet FastforWord – computer-delivered exercises that build the cognitive skills required to read and learn effectively. Focus on memory, attention, processing rate and sequencing. Lorene to update following training received in London earlier in the month.

Monday 19^th Dec 6:30pm

Xmas Party! Social gathering! Other half/ partner welcomed!

Monday 16^th Jan 6:30-8pm

Sinead Ni Fhloinn- Speed of delivery trial- fluency- mixed trials, motivation, variable schedule of reinforcement.

Monday 20^th Feb 6:30-8pm

Dr. Lorene Amet: Rethinking Autism: Presentations, Aetiologies & Interventions- Background on autism.

Monday 19^th Mar 6:30-8pm

Sinead Ni Fhloinn- subject to be decided by the group.

Please click on the post title to view the video from Channel 4 News.

The number of children – some as young as five – being prescribed powerful antipsychotic drugs has doubled in the past 10 years, according to an investigation by Channel 4 News.

As many as 15,000 children and young people under the age of 18 were prescribed this medication last year. But these figures are only from GP surgeries and primary care trusts and do not include hospital prescribing, which suggests the true number could be far higher.

Astonishingly, no official data is kept on the number of youngsters being given anti-psychotics. This has only now been revealed after Channel 4 News commissioned a drug database company to collate them.The investigation comes as the government announced that GPs could face jail if they are found to be “chemically coshing” elderly patients with dementia.

But no mention was made of children and young people in the announcements.Anti-psychotics are meant for patients with serious mental conditions such as schizophrenia, bipolar disorder and psychosis. But mental health experts now say that they would also appear, in some instances, to be being used to control children’s behaviour.

If there is a doubling in the rate of children being given anti-psychotics that is a worry. My worry is that these drugs are being used for other purposes. Professor Tim Kendall.

The investigation also found children are being left on the drugs for years at a time and are not being properly monitored, which is against best practice guidelines.

Professor Tim Kendall, who has been asked to write the first ever guidance on prescribing anti-psychotics to young people with serious mental illness, said that these findings are extremely concerning.

“As far as I am aware there is no evidence that there has been a doubling in the rate of psychosis. So if there is a doubling in the rate of children being given anti-psychotics, that is a worry,” Prof Kendall said.”My worry is that these drugs are being used for other purposes.

“Family stories And that would be appear to be what is happening. We have spoken to families whose children have been given the drug for attention deficit hyperactivity disorder (ADHD) and for autism.

The family of one young boy first prescribed an anti-psychotic when he was five for so-called “challenging behaviour” has subsequently been told that he was in fact in pain. The boy, now aged eight, is autistic and regularly banged his head against hard surfaces and lay on the floor kicking and screaming. But his parents said the anti-psychotics he had been on for three years had had no benefit at all.

Eventually he was seen by Professor Chris Oliver, of Birmingham University, who has been researching behavioural problems in children with autism. His conclusion was that the young boy was most probably in pain – suffering from gastro-oesophageal reflux, more commonly known as heartburn. But because of his autism he was not able to articulate that he was physically suffering.

Anti-psychotics were developed in the 1950s and have been widely prescribed to adults since the 1970s. But they can cause, among other things, dramatic weight gain, diabetes and heart disorders. They can also leave patients with a Parkinson’s disease-like tremor which does not stop even if they are taken off the medication.

What nobody knows with any certainty, though, are the long-term effects on children. And all approaches made to authorities here to find out if there is any data on trials involving children have been blocked by the pharmaceutical companies.

Prof Kendall was even hampered by America’s Food and Drug Administration, which does hold data on any trials conducted on anti-psychotics. When he requested access to the information he was told to put in a freedom of information request.”If there are trials that are unpublished, what that means is there will either be trials which show the drugs work as well as we think or in fact they might be even more harmful than we think,” he said.”I am appalled, absolutely appalled. This data should be available for people such as us who are working on behalf of the NHS, patients and parents.

“In a statement the Association of the British Pharmaceutical Industry told Channel 4 News: “The industry is committed to being as open and transparent as possible in its disclosure of information.”It added that any prescription of anti-psychotic drugs to children “will only occur after careful consideration and risk-benefit assessment by the health care professional on a case by case basis.”Of concern to a growing number of experts is the effect they have on developing brains. They said proper monitoring was essential. But Channel 4 News has obtained a confidential report into the way mental health trusts look after children and young people on anti-psychotic drugs. It found there was “no evidence” whatsoever that some young people are being properly monitored.

‘No monitoring at all’ A young girl (her family did not want her identified) we met was put on the medication at the age of nine after she developed psychosis. It is agreed that she needed help, but her father said that he had been unprepared for the effect the anti-psychotic would have on his daughter.”I was not told how dangerous this drug was,” he said. “There was no monitoring at all.”The father said that his daughter lost her memory, could not dress herself, even needed help brushing her teeth.

I was not told how dangerous this drug was. Father of girl prescribed antipsychotics

“You have to get a hold of their hand and walk them everywhere, their thinking is so muddled and the increase in appetite is incredible,” he said.”She would eat raw sugar out of the packet. She would go through a whole bottle of ketchup.”After intervention she has now had her dosage and medication changed and is also receiving intensive therapy. Her behaviour is beginning to improve.

Professor Peter Tyrer, who is an expert in the use of anti-psychotics, said that the unmonitored use of this medication is a “slow fuse to disaster”. Prof Tyrer, from Imperial College in London, said that drugs affect almost every part of the body.”This is particularly alarming because of course children have got their whole lives ahead of them.

“Chemical cosh? What is also alarming experts is that these drugs are being used for the wrong reasons. While nobody disputed that they are sometimes needed and can, indeed, save lives, there is the fear that too often they are being used as a chemical cosh.

A Department of Health spokesperson told Channel 4 News:

“NICE guidance states that children and adolescents should only be given antipsychotics following specialist assessment and they should be under specialist supervision.”For children suffering from severe psychotic illnesses, appropriate drugs can help both the child and his or her parents live a more normal life, and in some cases this can mean the difference between a child going in to care or living at home.”The government is committed to improving children’s mental health and has recently announced £32million to provide access to effective psychological therapies specifically designed for children and young people.”

Over the last few years, there has been increasing interest in autoimmunity to the cerebral folate receptor, with findings suggesting that around 50% of the ASD cases are positive for these auto-antibodies. It is thought that auto-antibodies to the cerebral folate receptor block the transport of folic acid into the cerebrospinal fluid, leading to low 5MTHF (5-methyltetrahydrofolate), the form of folate that is used in the central nervous system and could account for some of the neurological symptoms observed in ASD.

Cerebral folate deficiency has been associated with mental retardation, movement disorders, epilepsy, speech and communication disorders, but it is unclear at the moment how prevalent the issue is across the whole autism spectrum. However, we must stress that the biochemical processes implicating folic acid have been found to be commonly abnormal in autism: methylation and transulfuration (1). Equally, there is very good outcomes with a related therapy using methyl-cobalamin (vitamin B12) (2).

A study published in 2007 by Ramaekers et al (3) identified 19 patients in a group of 23 low-functioning autistic children presenting with neurologocial deficits who were found to be positive for folate receptor auto-antibodies. The authors reported good outcome to remedial treatment with folic acid. Other reports have been made and confirmed an implication for a significant proportion of children with autism (4).

There is no cost involved in testing the children. The study has received ethical approval from the University of Texas and no further ethical requirement is required at this end.

The Autism Treatment Trust has the opportunity to test for the presence auto-antibodies to cerebral folate receptors with the support of Professor Richard Finnell, Department of Nutritional Sciences, Chemistry and Biochemistry, at the University of Texas at Austin.
We are now ready to proceed with the study and should be in the position to send 20 samples to Texas in January. We will update you on the outcomes of the study in or next newsletter.

Prof. Richard Finnell is visiting the Edinburgh in January and we are hoping for him to give a short presentation on his work at the Autism Treatment Trust. Please check our web site for updates.

Richard Finnell

Professor, Departments of Nutritional Sciences, Chemistry and Biochemistry
Director, Genomic Research, Dell Children’s Medical Center
Ph.D, 1980, University of Oregon Medical School

Dr. Finnell’s research examines the interaction between specific genes and environmental toxins as they influence normal embryonic development. While his primary research focuses on discovering the role of folic acid in the prevention of birth defects, his laboratory is also working to identify the gene or genes that determine susceptibility to human neural tube defects (NTDs) and orofacial clefts. Dr. Finnell is studying teratogenic agents, both pharmaceutical compounds and those found in the environment, that contribute to the population burden of birth defects.

References:

(1)  Main PA, Angley MT, Thomas P, O’Doherty CE, Fenech M. Folate and methionine metabolism in autism: a systematic review.

Am J Clin Nutr. 2010 Jun;91(6):1598-620. Epub 2010 Apr 21.

(2) James SJ, Cutler P, Melnyk S, Jernigan S, Janak L, Gaylor DW, Neubrander JA. Metabolic biomarkers of increased oxidative stress and impaired methylation capacity in children with autism. Am J Clin Nutr. 2004 Dec;80(6):1611-7. http://www.ncbi.nlm.nih.gov/pubmed?term=Neubrander%20autism%20James.

(3) Ramaekers VT et al. Folate Receptor Autoimmunity with Cerebral Folate Deficiency in Low-Functioning Autism with neurological deficits.  Neuropediatrics 2007; 38: 276 – 281.

(4) Dr Bradstreet 2011.

Another exciting development at ATT:  we are now able to help children begin a Fast ForWord computer based language programme. Initially, we anticipate assisting 12 children with this programme in 2012. After this, we will work towards putting ourselves in a position to assist children long-distance. We are aiming at significantly reducing  the cost to families for accessing FFW and making this language processing therapy more widely available.

The Fast ForWord (FFW) programme is a learning acceleration programme based on over 30 years of neuroscience research combined with the advancement of computer technology. The programme develops the cognitive skills that enhance learning in areas of memory, attention, processing rate, and sequencing. FFW offers a range of game sounds that are spectrally and temporally altered to enhance cues important for speech discrimination and these enhancements are gradually reduced as a child progresses through the game. Games are completed when the child reaches an accuracy criterion (85%), which eventually leads to the advancement from the Language to the Language to Reading programme. The strengthening of these skills results in a wide range of improved critical language and reading skills such as phonological awareness, phonemic awareness, fluency, vocabulary, comprehension, decoding, working memory, syntax, grammar, and other skills necessary to learn how to communicate or to become a better reader.

FFW is particularly suited to address the language processing difficulties experienced by individuals affected by Autism Spectrum Disorders (ASDs). The auditory processing required to understand words, syllables and sounds is often impaired in these conditions, causing the children to ignore speech and tune out when they are spoken to. This programme allows the progressive building of the auditory skills required to process language. It capitalises on the ASD individual’s innate ability to use a computer-based technology with high visual information content that also features reduced distractibility and social exposure.

The programme involves a daily set of activities for 5 weeks selected specifically to match the child’s performances and learning preferences. The activities last between 30 and 100 minutes and the whole programme runs for 4-16 weeks depending on the individual. The activities will be conducted in a purpose-build learning environment designed to maximise the child’s learning, with minimal distractibility and access to reinforcers to motivate the child to complete the proposed activities.  The responses given by the child are not prompted to insure that they reflect the actual understanding of the language activity. If performance decreases, the following activities are adjusted accordingly, and equally, higher performance will dictate further increased language complexity.  The performance of the child is recorded at all time.

The success of FFW Language in remodeling the brain was demonstrated with the brain imaging technique of Functional Magnetic Resonance Imaging (fMRI) with individuals affected by Dyslexia. Thousands of children have successfully used Fast ForWord on an Asperger’s and autism programme in the US though the programme is not as readily available in UK and the rest of Europe. To date however, there is insufficient validation of this approach in RCT design, possibly because FFW is compared to other language approaches and tested for a short duration (e.g. 6 weeks in some trials). Other studies have demonstrated very promising benefits of FFW. For example, Russo and collaborators showed that auditory training on auditory function in children with ASD, brainstem and cortical responses to speech sounds presented in quiet and noise were improved in five children with ASD who completed FFW training. It is important also to realise that as far as autism is concerned, the child needs to be assisted in completing the activities, as motivation and distractibility are major limiting factors to learning. At Autism Treatment Trust, we believe we have the required knowledge of autism and good inter-personal skills to maximise the child’s performance in a given learning task.

Funding was awarded to ATT from the Big Lottery, Award for All for an iMac and equipment required for the FFW programme.

References:

Friel-Patti, S., Loeb, D.F. and Gillam, R.B. (2001) Looking ahead: An introduction to five exploratory studies of Fast ForWord. American Journal of Speech-Language Pathology, 10: (3): 195.

Gillam, R.B., Loeb, D.F., Hoffman, L.V.M., et al. (2008) The efficacy of Fast ForWord language intervention in school-age children with language impairment: A randomized controlled trial. Journal of Speech, Language, and Hearing Research, 51: (1): 97.

Lajiness-O’Neill, R., Akamine, Y. and Bowyer, S. (2008) Treatment Effects of Fast ForWord® Demonstrated by Magnetoencephalography (MEG) in a Child with Developmental Dyslexia. Neurocase, 13: (5-6): 390-401.

Rapin, I. and Dunn, M. (2003) Update on the language disorders of individuals on the autistic spectrum. Brain and Development, 25: (3): 166-172.

Russo, N.M., Hornickel, J., Nicol, T., et al. (2010) Biological changes in auditory function following training in children with autism spectrum disorders. Behavioral and Brain Functions, 6: (1): 60.

Veale, T.K. (1999) Targeting temporal processing deficits through Fast ForWord (R): Language therapy with a new twist. Language, Speech, and Hearing Services in Schools, 30: (4): 353.

ATT has received a donation from the Big Lottery to purchase 4 iPads. We intend to lend these to our families for a period of 3 months with some initial guidance on how to assist the child to maximise the use of the device, based on his or her communication and learning needs. Below is more information about what can be achieved with this totally revolutionary technology. It’s a very exciting and important development for autism.

The iPad is a relatively recent technological development that offers great potential for people with autism. This computer interface can improve the efficacy of language instruction and augment the communication skills of people with autism, even those with severely impaired speech. In this respect the iPad offers far more possibilities than most Augmentative Communication Device or techniques developed so far. It allows a person to communicate for example, with pictures, avoiding the troublesome search through numerous pictures to select one to convey a specific meaning (e.g. iCommunicate, iConverse, ProLoquo2Go). The meaning of the pictures can be read out loud, even with a pre-recorded culturally compatible accent (e.g. See Touch Learn). This method of communication can be taken anywhere. It can also assist with the formation of sentences, not solely from a grammatical and vocabulary view point, but also with a semantic support, assisting in linking a sentence to its meaning with supporting pictures (see links below for a range of applications).

The iPad can also provide entertaining means to teach almost any skills, ranging from literacy (ABC Writing, Montessori Crosswords, Making Sentences, Trace Right!), and numeracy (Intro to Math, Montessory, FlashToPass Free, Kids Math, etc covering the full curriculum), to decision making (e.g. Choice Board Creator), sequencing (e.g. Zorten.com/Making sequences), short-term memory, planning, which are all beneficial and complementary skills also commonly affected in autism.

An iPad also provides effective means to teach appropriate behaviour in a given situation, for example through video modelling, or social story (e.g. Story builder). It also assists creativity, for example making collages (Mixel Application), editing photos or videos (8mm Miniatures, Vimeo App), making music (e.g. Dropophone and Drums Applications), or drawing (Inkpad, SplatterHD, Zen Brush, Doodle Buddy).

The iPad is particularly effective because of the use of concrete visual information of a highly motivating and stimulating nature, with reduction of distracting information. It is socially appropriate and can be seen as being an asset to a person, rather than other forms to assistance typically used by disabled people with associated stigmatisation. Complex aspects of language can be addressed in a logical and structured manner and taught effectively by progressively addressing more and more complex skills, with prompting strategies in place if required and clear rewarding outcomes upon completion of an activity. The device also requires minimal motor skills, which can also be affected by autism. Furthermore, it is possible to use this device to monitor performance, communicate the outcome of an activity to any party over the Internet, and some independent schools have started to use the ipad as a base upon which an entire curriculum can be built (e.g. Cedar Academy in Greenock).

Autism Treatment Trust is in a position to lend to families some iPads with a range of selected autism applications and to demonstrate with the children how the device can be used. It is hoped that this assistance will provide further opportunities for families and individuals with autism to potentially benefit from such a device. Ideally, the device should be made available to all individuals with an ASD, with some initial support on how to maximise its use.

References:

The iPad, a useful tool for autism. 2020.

For more Applications, use the Autism Apps to search through a wide range of applications with direct applications to autism.

Read More