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David Wilson

Inclusion of a child with Autistic Spectrum Disorders

17 posts in this topic

This newspaper story has attracted many comments:

http://www.thisisexeter.co.uk/displayNode....&folderPk=79877

I'm hoping for a few comments here as well...

The article has all the usual features of a local special educational needs/special educational provision mismatch with the local education authority emerging as the evil ogre. I wonder, though, whether there are lessons to be learnt beyond the knee-jerk "if funds were released, everything would be fine" response?

After all, would the public at large be prepared to pay the higher taxes required to fund an educational service where every child with individual learning needs could have a choice of one-to-one support in mainstream or a special school placement?

And is there enough guidance for teachers, especially those in mainstream, about meeting the needs of their students with ASD? My impression is that the ASD advice online and in print has little to say about teaching and learning, which is what schools are there for. Therapy rather than education is the focus of such literature. Isn't it time to treat the child with ASD as a learner, not just a patient?

What do you think?

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Here in Tasmania children with ASD are mainstreamed unless they are almost completely unmanageable. We have 0.7% of our school population in special schools compared with the OECD average of between 1.5 and 2.0%. We are constantly told by the powers that be that this is a wonderful thing, but many of our teachers think otherwise. While students at the mild to medium end of the spectrum are probably benefiting and learning and not impacting too much on others, those with severe problems create huge stress for teachers, cause disruption to the learning of others and gain little benefit themselves. They often miss out on the skills training which is vital for their condition and often are "babysat" by TAs who have insufficient training and are paid too little to properly support them. Our system often does provide a TA one to one for these students but they are not necessarily the right type of support. And the numbers of these students is growing. A more ideal situation would be to have a special unit on mainstream sites and integrate and separate as necessary for them to learn and progress, as well as give others sufficient attention. But of course this takes a great deal of money and it's easier to come up with a solve-all philosophy of total inclusion than find the money. Cynical, moi??

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Cynical? Realistic, perhaps?

Part of the problem is the breadth of the spectrum as well as the changes within an individual over time. Throw in indications that for some an attention to diet makes a difference, for others the difficult behaviours is simply BECAUSE of the mainstreaming as the closeness can be practical torture to some Autistic persons.

Education of carers and those providing the education to carers is essential. It's a developing field and new insights appear regularly.

Unfortunately the onus is on those who are providers to work on this. Better provisions should be possible within current funding levels through better support. Ideally of course a realisation of the importance of treating it as a group of individuals rather than as a grouped disorder and developing responses based on this would help.

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My interest in this subject is personal. My now 17 year old son was diagnosed with a "nonspecific learning disability" during preschool, which was eventually classified as an extremely minor autism or aspergers's syndrome when he entered middle school. We still don't know exactly what kind of learning disability he has, but he just doesn't "get" much of the information he should. From the viewpoint of a parent, this is an extremely frustrating thing to deal with. We are always uncertain just how much better our son could do in school (and socially), as opposed to how much is related to his uncertain disorder that he is powerless to combat.

At any rate, here in the United States, especially in the very wealthy county we live in, support for special needs students is quite strong. The issue of inclusion is a complex one, with no easy answers. I can certainly understand how frustrating it must be to the students who don't have any comprehension or learning problems, to deal with their peers who have severe or even relatively minor limitations. It definitely impacts on their ability to learn at a sufficient pace, and imho has fueled the growth of the "gifted and talented" programs, whereby very bright children are steered, at an early age, into classes where learning is accelerated and more challenging, and no special needs students can distract them. There are students in our county schools with downs syndrome and other serious disabilities, who almost certainly cannot follow a normal curriculum. However, as the parent of a child who has very minor limitations, and can easily follow a normal curriculum with reasonable accomodations, I understand parental opposition to placing their child into a "special" school and the pain of seeing them driven away in the "short bus" away from the school the other neighborhood children attend. BTW, here in the States, jokes about the "short bus" and the gratuitous use of the word "retard" are all the rage. It offends me deeply to hear middle-aged adults call someone "retarded." One of daughter's teachers even used the word in her class!

Anyhow, I hope I'm not intruding on this discussion, because my only expertise in this area comes from the personal experiences I've had dealing with my son and the schools. I'm new here, and am very impressed by the range of topics at the Education Forum. If anyone would like me to share some of my personal experiences with special needs teachers, or the social issues that arise with a child who is "different," I'd be happy to do so.

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Welcome to the forum. I only post on the educational issues sites as I'm not a JFK devotee.

Here in Tasmania we mainstream almost every child except the most profoundly disabled and it just doesn't work. I fully understand why parents don't want their disabled students in special schools but I think the criteria for mainstreaming has to be that they don't negatively impact on the education of others, which I think is what you are saying. Unfortunately, here, they do. Children who need to be tube fed, nappies changed, severely intellectually disabled are mainsteamed, even if they spend all day screaming, shouting etc to the extent that the other children are unable to hear and/or concentrate. My teachers' union, of which I'm the state president, is pushing for what we have titled, as they do in Canada, responsible inclusion. The trouble is that the irresponsible mainstreaming has been allowed to go on for so long that it is now going to be extremely difficult to alter parental expectations.

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Paarents will respond positively very quickly to a shift that leads to a real solution for them. Parental expectations are that this will not happen soon. The parents that I have known have worked against very difficult situations to the best of their ability for their children and while often not totally successful they do achieve things. The pity is that it consumes so much of their time and effort. Admittecly these persons that I have direct experience of are probably exceptional, but exceptional in being informed and courageous and tenacious enough to do what other parents would very much like to have happen in their lives. IOW the exceptional express the expectations of the many if fully informed.

As it is fundamentally a funding problem that could legitimise a huge range of other shifts in focus it is not economically viable. Therefore the solution is grass-roots, neighbourhood, under the guidance of expert knowledge. Come to think of it, if there was a reduction in the amount of money spent on making things and using things that kill, that would also have a benifitial effect.

I suppose in the final analysis it again boils down to the fact that today the inmates are in charge of the asylum. (obviously here I'm referring to the halls of power)

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I think this is an exiting piece of news.

What has often been stated is the problem with the wide range of Autism and the struggles by parents to have the needs of their children met.

Cuba is implementing an approach that I think needs to be studied.

http://www.granma.cu/ingles/cuba-i/27dic-AUTISM.html

:

Havana. December 27, 2012

VILMA ESPÍN AUTISM CENTER IN CIENFUEGOS

A humanist approach to education

Julio Martínez Molina (Text & photo)

MUCH has been written about autism, for example, that many persons with this condition are visual thinkers and store words in their written form. Films have highlighted, or possibly exaggerated, their abilities.

Treatment for the condition is a challenge for specialists, demanding dedication, patience and understanding.

This is exactly what affected children, adolescents and young adults have found in the Vilma Espín Autism Center in Cienfuegos, the pride of the province’s educational system.

The Center’s director, Tania González Fonseca, stated that the school’s goal is to provide the support needed by these students to achieve an independent, useful life, and to strengthen the development of specialists who work in the field.

The staff, she said, has implemented a program based on individualized assessment using a variety of methods and an educational model consisting of pedagogical and psychological strategies to be used with autistic students in order to facilitate their social development. The center also supports families in the use of similar strategies at home.

Educational psychologist Ileana Alvarez Araújo and Idolidia Veitía Cantero, a specialist in methodology for autistic students, work in the Center, along with another psychologist, a speech therapist, five teachers and four aides, serving 18 pupils, of the 23 identified as autistic in the province.

"All of the work we do here is therapeutic; the academic process is part of an educational psychological approach to stimulate responses in children of social behavior, imitation and adaptation. They are children who are governed by routines, they respond to the same stimuli. Thus there are no surprises in the school, no schedule changes, and we follow procedures adjusted to meet their needs," Alvarez explained.

"They learn to work through imitation, but do not automatically demonstrate imitative behaviors, even for the simplest actions such as dressing themselves or moving a spoon to the mouth. Our methods, therefore, are based on constant observation and discovery of their potential," the specialist said.

INDIVIDUALIZED ATTENTION FOR EVERY CHILD

Each child is unique. Six year old Carlos Manuel González Rivero likes very much to be cuddled and hugged, but avoids physical contact in all of his other actions. He is attracted by electronics which respond - a cellular phone, a camera’s flash or the start-up of a computer.

Carlitos has learned to control his bladder and teachers are now working with him to overcome his habit of walking on tip-toes.

Laura María Rovira, eight years old, has acquired skills to work on a computer. With visual support, she can determine what action to complete and how. She has also developed functional echolalia, she repeats what she hears.

Adolescent José Alí Martínez Ribalta likes music and can recognize all the singers he has heard. Mnemonic strategies were used to help him identify colors, which he knew but described with his own words or names, mostly associated with foods, such as ‘pudding’ for white.

Thirteen-year-old Eduardo Enríquez Carballosa has a special predilection for big cats and knows all their characteristics and habits. This reflects a strength the staff can build on, Álvarez explained.

The children have attended other special schools, where good work was done, but here they progress because of the one-to-one approach, said Veitía, the methodologist.

Teachers note specific behaviors such as hand motions or other body movements which hamper curricular activities, serving no purpose really, thus the importance of one-on-one work.

Given the differentiated approach, the children have improved their socialization, communication skills, recognition of space and adaptation to the school’s schedule of classes, snack time and lunch, according to Álvarez. Even the most low-functioning move to the lunchroom and sit in their places, when the bell rings, she added.

The school has achieved positive results in its first year of operation, reflecting the humanistic character of Cuba’s public education system which includes not only appropriate attention to the children, but support for families, as well, according to speech therapist Liliana Díaz Ortega.

Three students with Asperger’s, four diagnosed with Rett Syndrome, three classic autistics and eight with generalized developmental issues have all progressed, thanks to the implementation of this costly educational program, offered free of charge.

The Vilma Espín Center additionally offers students support beyond the walls of the school, in their own homes as needed to learn life skills, and even in the workplace, such as is the case with one student now functioning in a ceramics workshop.

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It sounds like a really good program and basically just a lot of common sense (which isn't very common these days in Ed Depts) but it also sounds extremely costly and sadly Australia is low on the world list of educational spending.

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"... thanks to the implementation of this costly educational program, offered free of charge. "

It's well known that Cuba leads on many medical fronts . I think it has a lot to do with economic priorities. People first. They've just had their elections and they are quite remarkable too in putting people first. So, as Cuba is run by the people I'm not surprised that their needs are a priority. I can understand how seemingly no amount of economic and other forms of terrorism by what they call "The Empire", meaning the USA, on what they call Our America (see Che') meaning the rest of the American continent, will stop them from defending what they have and maintain it and continue this growth tyowards a real insprational alternative to Western Imperialsism. So, if people want to have the same sort of people orientated setup in their part of the world they are going to have to fight for it. As earlier post suggested this when carried out by individuals there is a huge economic dis-incentive to do so. Therefore a United Internationalist movement to counteract and destry the forces that maintain the Status Quo is the only way to guarantee a system such as being implemented in Cuba.

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or not. Not quite sure what possessed me to write that. Tho when thinking about it if one is looking for a lasting solution then it has to be unaffected by economic conditions that defines priorities. To make these common sense things happen personally I think one of the most important one is the one to one approach. Above that until about one to five it gardually becomes merely a management issue. At one to seven it becomes impossible to be anything but a management that serves no purpose except to give respite to others. This is economically the standard of even many of the best organisations in the developed West.(or as some would have it North) Inevitably some progress can actually happen when a scholarly one to one approach provides the most optimum possibilities and that happens to be economically least viable. So if economic viability is prime there will never be a situational standard thats optimal to the client, the autist,

Hence, I suggest in this, as in much, a drastic status quo change is imperative.

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aap_small_rgb_17sra9l-17sra9u.jpg

Folate linked to lower severe autism risk

AAP February 14, 2013, 8:28 am

A new study showing a link between taking folate around conception and a reduced chance of severe autism could have implications for other brain disorders like schizophrenia.

Professor Andrew Whitehouse from Western Australia's Telethon Institute of Child Health Research said a new Norwegian study into the effects of taking folic acid supplements had implications for many disorders.

"Taking folate around conception is very much known to reduce the risk of what are known as neural tube defects, so things like spina bifida," Professor Whitehouse said.

Prof Whitehouse said it had already been considered that folic acid may also reduce the risk of other neural developmental problems such as autism.

"What this study found was that it only reduced the risk for the more severe types of autism," Professor Whitehouse told AAP.

"It could potentially play a part in any disorder that is associated with neuro-development, so other things such as ADHD (Attention deficit-hyperactivity disorder) or schizophrenia for example," he said.

"The findings do indicate that the importance of folic acid is not just in reducing neural tube defects such as spina bifida, but may very much be important for other neuro-developmental disorders," he said.

The study, published in the Journal of the American Medical Association, showed children born to women who took folic acid supplements four weeks before, to eight weeks after, conception appeared to be at a lower risk of autism.

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We use some rooms in a local high schol for our U3A (University of the Third Age) classes - don't think it's known in America, it's a school for seniors - and one room next to ours has been taken over for a incoming 12 yr old who has the vary rare Chromosome 17 syndrome. He is violent, destructive and without self-control. He has to have a full-time teacher and full-time aide and therapy as well as a whole room and toilet to himself. This is probably costing our small Ed'n Dept in the range of $150,000 a year and there is presently no hope for improvement, so for 10 year of schooling, $1.5 million. How does a small community deal with this when other children able to learn have funds cut as a result of balancing the budget?

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I think one thing needs to be established.

Is it possible that some research is being carried out and therefore the money spent could be a positive thing.

_

Separately, I wonder if this syndrome has been at times called chromososme x. The reason I ask is that in my work as a carer for children and adults with a range of difficulties we had two persons with this syndrome (x)*. I was told then that what they had was very rare.

The most difficult and resource consuming thing about the care of these two was their relative high functioning and very unpredictable bursts of energy that was usually destructive, In these, fairly frequent, episodes it was certainly very difficult for them to have 'control' over their actions, however while ripping the place apart and throwing things all over seldom was anyone injured. They were often themselves most in danger of injury. (Ripping doors off hinges, smashing windows with the hands, etc)

In economic terms this meant that the other clients suffered from lack of attention to their particular needs as there was never enough staff.

If this is a study to see what can be more effectively done to help people with this syndrome and then in turn help many others it is possible to see this as worthwhile expenditure.

At the same time anything that helps to better focus resources in the service of persons with these kinds of difficulties by discussing these matters can all go towards broad based education spending reform.

edit *clarification

Edited by John Dolva

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Havana. April 17, 2013

Sensitivity, understanding, inclusion

Cuba commemorates World Autism Awareness Day

Yenia Silva Correa

Established by the United Nations General Assembly in 2008, World Autism Awareness Day is observed April 2 in an effort to improve the lives of individuals with this condition.

According to statistics, there are some 70 million persons worldwide with autism. Over the last 11 years, this number has increased significantly, a trend which experts attribute to a combination of genetic and environmental factors.

As a UN General Secretary message indicates, autism is a worldwide challenge which requires attention on an international level.

Cuba is among countries with the lowest incidence of autism, but has established five schools with highly qualified personnel to serve children with the condition - two in Havana, one in the central city of Cienfuegos, and one each in the eastern provinces of Granma and Santiago de Cuba.

One of the facilities in Havana, the Dora Alonso School, was inaugurated by Fidel Castro in January, 2002 and offers educational services to children, families and professionals from other countries. Dr. Imilla Campa, director of the school, spoke with Granma International.

When and how was the date first observed in Cuba?

We began the observation of April 2 in 2008. We have always held social events. This year we had an activity during which both of Havana’s schools presented a cultural performance. At other times we have gone to other community centers and held art-related activities.

Cuba has a low incidence of autism. What factors do you believe contribute to this?

Pollution is not excessive in Cuba, we do not eat much food with preservatives, early diagnoses are made and there is better training from the public health and educational point of view.

This school and the one in Santiago were established in 2002. Were services of this kind available in the country prior to that date?

Prior to that date, in 1992, the school for children with emotional disorders began to offer autistic children services from an educational-psychological point of view.

What has the school accomplished during these 11 years of work?

Educationally, the children have progressed. Another accomplishment has been the attention offered families with children in the school. We integrate educational activities and offer support, an opportunity for families to express their concerns and needs.

The education of these children is not confined to the school; we also go out into the community. Another great strength is that children come to Dora Alonso for a limited period of time. The school prepares them to be incorporated within other institutions. Society knows these schools exist, that these children exist and, to a certain agree, acceptance has been achieved.

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John - this particular child is basically being contained with activities and educational play etc but there is no research going on. Tasmania is tiny and the poorest state in the country and we have little opportunity for research into this type of problem.

Because we are so small the gov't also gets away with not providing sufficient proper places for this type of child and they are often mainstreamed with an aide and little else.

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