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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Sunday, September 10, 2006


What do we mean by Inclusive Education? Some Comments from Others

Excerpt from “Parental Models Go To School,” from An Unexpected Joy:

How you think you should behave as a parent and how you think your child should be taught come of the same deep place inside. Schooling is a very emotional topic. We all know stories of horrible things going on in classrooms, and there is much righteous fodder for the educational reform movement. But rigid thinking about a school’s structure erupts from the same dark source as rigid thinking about a successful family.

It gets even more emotional when you throw in disability. With the abandonment of the developmentally disabled by the medial system, the societal responsibility has been shifted to the school systems. A lot of good has come of this. Speical services can most conveniently and effectively be served up in this setting. What an experienced special education teacher or occupational therapist or autism specialist has to say about a problem is much more likely to be helpful than what your physician has to say. There is no disputing the advantages to our kids from the ADA and the development of services and accessibility that has resulted from this legislation.

I am always shocked when I run into resentment toward special needs kids and the amount of money spent on their education. I am not aware of people resenting speech rehab services for their elderly stroke relatives or post-closed head injury rehab for young adults after their skiing, diving or auto accidents. The public is quite naïve about medical insurance. Many people in my state are so used to extraordinary coverage that they think of their insurance cards like a charge card, with the bill going to someone else. The notion of insurance money being a pooled, collective resource is lost on them.

A more visible form of pooled money is the public-school dollar. This is probably because of the election of local school boards and public voting on school millage issues. Parents feel they have more control over this money and are therefore more vigilant stewards. So they resent the extra dollars it takes to educate disabled kids. They see it a smoney not being spent on their kids. They are unaware of the shift of this responsibility out of the medical dollar – which they view unrealistically – into the more visible public-school dollar. The idea that these dependent individuals will otherwise end up on welfare, another pooled money pot, is lost on many of them. Basically, the biggest bang for the buck is the money spent on schooling these kids. It will result in less money being spent from other pots.

The passage of the ADA resulted from years of persistent, effective lobbying by disabled individuals and their families. Part of that early activist movement was the radical notion of inclusion. The concept of least restrictive environment was introduced and determined to be an important goal in meeting the needs of special education students.

This was good. It brought many problems out of the closet. All kids benefit enormously from effective inclusion programs. Both the special-needs hvcild and the typical child benefit, as they do from anything that increases healthy diversity in the classroom.
…Ineffective inclusion programs are another matter altogether. When they’re bad, everyone loses. But in too many schools, the trend is to push everyone into the mainstream. When that happens, an individual assessment of the child’s needs isn’t considered, and inclusion is hyped as a goal for all special-needs children.

Nic didn’t benefit from inclusion. The worst year of his school career was the year he spent in the mainstream classroom. And this was with the cards stacked in his favor. He had a marvelous teacher, whom he knew from his PPT (pre-primary impaired) classroom. He had a loving and experience parapro. The parents of the other kids in his class bent over backward to include him. It was simply too much for Nic. There was too much noise, activity, and visual stimulation. All that enrichment was right for the regular kids, but it was toxic for him.

I have two concerns about mainstreaming. The first is what I call malicious mainstreaming. Parents who are still in denial about their child’s prognosis commit this. They insist on mainstreaming because they mistake the process of role modeling provided by the other students for a normalizing process. When a year goes by and there is no change in their child, they think the teacher has done something wrong or someone is to blame.

My other concern has to do with the basic nature of humans. My son has known he was different from the get-go. He has communicated this to me in many ways, most of them nonverbal. When you put a child who is profoundly different in with a bunch of fully equipped kids, everyone knows what’s going on. If the children have been brought up well, they are polite and practice acts of inclusion as they are able to. Many are very kind. If they have not been brought up well, they can be cruel. Neither of these is an ideal environment because both preclude the development of a real peer group.

…I believe a critical mass of time spent with real peers allows true friendships to grow. This is as good as it gets. We found this in Nic’s contained classroom.

A good teacher uses these real relationships to teach. Renee, Nic’s current teacher, is the gold standard in my book. My son knows about “showing heart” and “giving zingers” because these behaviours are illustrated and discussed in his classroom every day. Renee is able to make these principles concrete.

The continuity we have been blessed with has allowed a real classroom culture to develop. This in turn benefits the younger kids who come into the room. For my son to be a role model for a sever-year-old is huge. He sees himself as competent and feels pride. This is true growth. It helps interrupt the cycle of constant dependence that so mnay of these kids suffer from. When they’re around the regular kids, they are never fast enough or smart enough or acceptable enough. This is an exhausting way to live. If we didn’t have a contained classroom, I don’t believe these trusting relationships could have developed.

The children in Nic’s class are remarkable. They show pure and simple tolerance of diversity. They are sib-like with each other, which means they can be joyful with each other and then turn around and give each other a hard time. The kids gloves are off, and they’re on as even a playing field as they’ll ever get. This is a much more balanced environment for them to grow in. Mainstreaming cannot provide this kind of intimacy.

…One of the specialists we saw was a woman who has studied the educational needs of autistic people for more than twenty years. She gave me a wonderful gift. AS we were going over the summary of the recommendations they were making, which was all in educational and pscychological language I didn’t understand, she paused. She looked up, right at me, and said “Basically, people with autism never stop learning. I’ve seen people learn to read at eighteen. I’ve seen people learn to live independently early in their thiries. They aren’t restricted by these developmental stages like regular learners seem to be.”

She opened a door for us. She gave Nic a future. I don’t even know if it’s accurate, but the notion that Nic will continue to grow and benefit from enrichment changed the way the horizon looks to us. It feels a lot different than the smaller and smaller world we envisioned for him at the worst grip of our fear.” (From An Unexpected Joy by Mary Sharp, M.D., pp 102-108.

Here in Toronto, the gap is too wide. It’s either an “autism school” that provides ABA, or trying to get Adam into the mainstream, with accommodation. Sometimes I feel the most flexible teachers and administrators will help us get through. But ultimately, it is the real acceptance of diversity that will change the education paradigm. Other times, I worry that if we don’t do inclusion well enough, autistic kids will still lose.

Most autistic adults hated mainstream schools because they were never accommodated. The goal here is not normalization, the goal is education. The best-ever for autistic kids, that not just manage behaviours, but educates to their fullest potential. Further, we have to consider what disabled children have to offer non disabled ones. Learning goes two ways. These can be done within existing schools or privately, but we have much work to do to define that large gap that currently exists between segregating the disabled, inclusion and the right education. That is why a continued drive towards acceptance is urgent.

Consider the world wide movements and actual practice of inclusion around the world:

Inclusive education - a worldwide movement
From Centre for Studies on Inclusive Education, United Kingdom

by Sharon Rustemier

Inclusive education is gaining ground. Throughout the world, teachers and others involved in education are working to develop positive educational experiences that all children and young people can enjoy and benefit from, together. For disabled children and those experiencing difficulties in learning, this means inclusion in mainstream schools and classrooms alongside their non-disabled peers. For all children - and adults - it means a more enriching and rewarding educational experience.

Internationally, the drive towards inclusion is fuelled by a number of initiatives and treaties, including the UN Convention on the Rights of the Child (1989), the UN Standard Rules on the Equalisation of Opportunities for Persons with Disabilities (1993) and the UNESCO Salamanca Statement (1994). Together, these documents recognise the human right of all children to education which is inclusive. 193 countries have signed the Convention on the Rights of the Child, with Somalia being the most recent in May 2002. All but two countries (Somalia and the United States) have also agreed to be bound by the Convention by ratifying it.

Some countries have made significant advances towards promoting inclusive education in their national legislation. Examples include Canada, Cyprus, Denmark, Iceland, India, Luxembourg, Malta, the Netherlands, Norway, South Africa, Spain, Sweden, Uganda, the United Kingdom and the United States. Italian law has supported inclusive education since the 1970s.

As the 1999 report by the Organisation for Economic Co-operation and Development (OECD), Inclusive Education at Work: Students with Disabilities in Mainstream Schools, states: 'The rights of students with disabilities to be educated in their local mainstream school is becoming more and more accepted in most countries, and many reforms are being put in place to achieve this goal. Further, there is no reason to segregate disabled students in public education systems. Instead, education systems need to be reconsidered to meet the needs of all students.

From rhetoric to reality

This drive towards inclusion is not only rhetoric. Rather, the reality of inclusive education is transforming the lives of millions of children - and teachers - in countries across the world. According to the OECD report, there is a decline in the proportion of students in 'special' schools in most countries. CSIE's Index for Inclusion, which helps ordinary schools break down barriers to learning and participation, is being taken up in a range of countries around the world (see page 16).

Diversity in the mainstream is increasing in many countries. The vast majority of disabled children and young people in Iceland attend their local schools. In Italy, more than 99.9% of all children in the state sector are educated in ordinary schools. In the province of New Brunswick, in Canada, there are no 'special' schools - all children are educated in local mainstream schools.

A national study on inclusion in the United States in 1995, carried out by the National Center on Educational Restructuring and Inclusion, reported a huge growth in inclusive education for students with all levels of disability. A report from the Ontario School District in Oregon stated: 'The only criteria for a student to attend any of our six elementary schools, our middle school or our high school is they must be breathing.'

In Uganda, the human rights of disabled people are enshrined in the Constitution and sign language is recognised as an official language. Deaf children now attend their local schools, with appropriate support to enable them to learn. One observer noted: 'Instead of sitting silently and unnoticed in their classrooms, they now have sign language interpreters provided.'

In the district of Douentza, in Mali, West Africa - one of the 'poorest' areas of the world - villagers worked together with outside agencies to set up a much needed local school, which disabled boys and girls attend together with every other child. One of the teachers said: 'To begin with we had the commitment to include disabled children, but we did not really believe that they could be in school. Now we have seen for ourselves, and we have moved from commitment to conviction.'
These are but a few of many examples.

No room for complacency

Despite these significant advances, however, large numbers of disabled children and young people throughout the world - including in the United Kingdom - continue to be subjected to negative, deficit-based language and exclusion from good quality mainstream education.

Some countries - such as Italy, Uganda and Norway - clearly see inclusion as meaning all children and young people learning together in mainstream provision. But all retain a dual system of 'special' and ordinary education.

The existence of legislation supporting inclusive education does not necessarily mean that inclusion is happening in the everyday lives of children and young people. For example, there is a strong Government commitment to the philosophy and goals of inclusion in India, but this is not yet fully reflected in practice. German national policy and legislation support inclusive education but high proportions of students are placed in 'special' schools. The Norwegian policy of not providing 'special' schools is undermined by the practice of parents sending their children to 'alternative centres'. In Denmark, a pioneering country in terms of inclusive education, the number of children placed in 'special' classes has been markedly rising.

Not about money

It is not simply a question of funding. It is a common assertion that 'full' inclusion - all children and young people learning together, including all disabled children - would be too expensive. Yet the example from Mali demonstrates that inclusion can happen whatever resources are available.

International work by both the World Bank and OECD has shown that it is far more expensive to operate dual systems of ordinary and 'special' education than it is to operate a single inclusive system. In Reykjavik, Iceland, local authority staff calculated that the cost of educating a child requiring the most intensive support in a mainstream school was no greater than the average cost of sending students to 'special' schools.

The real problem lies with the historical investment in separate, segregated systems of 'special' schools, the lack of political will to make inclusive education available to all, and the uncertainties of some parents that inclusion will benefit their children. But throughout the world, people are seeing the benefits of inclusion for themselves. Everywhere, those who have experienced inclusive education - including providers and disabled and non-disabled students - are convinced that inclusion is the way forward.

From strength to strength

These experiences must be built on. The urgent task is to change hearts and minds, encouraging openness to the values and aims of inclusive education and a commitment to the human rights of all children and young people. Non-government organisations and individuals must also continue to lobby Governments, and raise awareness among teachers and parents of the advantages of inclusion. People directly involved in inclusive education need to share their knowledge and experiences with those just starting out.

Progress needs to happen on all fronts, from Governments passing legislation and formulating policy to people in schools working inclusively with real students. As one school director in Swaziland said: 'I had thought the problem of integration of children with difficulties was difficult to solve, and a problem of the state. But all my conversations have now confirmed my opinion that someone had to start, to break the mould, and fight against the isolation of children with special needs.'
Exchanging information about examples of good practice in the restructuring of mainstream schools in the UK and overseas is an essential step towards ending discrimination in education. In persisting with these efforts to secure a worldwide move from ordinary and 'special' education to inclusive education, we can press on towards the goal of making inclusion an everyday reality for all children and young people.

INCLUSION from University Of Western Ontario’s Centre for Inclusive Education
Dr. Jacqueline Specht

You learn to talk by talking
You learn to read by reading
You learn to write by writing
You learn to include by including
Bunch, 1999 p.9

What does inclusive education mean in Canadian society?

Prior to the 1970s, it was very rare to see children with exceptionalities educated in their home schools along with their siblings and neighbours. Typically, they were bussed to schools that had separate classrooms where children with special needs were grouped together for learning. In the 1970s, a movement began to bring children with special needs into the regular classrooms. These children may still have been bussed from other areas, but for certain times in the day, they were "mainstreamed". While the term mainstreaming seemed to imply that children were placed in the regular classroom, this was not really the case. Children with special needs were considered more like visitors to the class rather than full members of the classroom.

Why is inclusive education important?

Inclusion assumes that children with special needs are part of the regular stream and should be treated as such. Inclusion is based on Wolfensberger's principle of normalization (i.e., all persons regardless of ability should live and learn in environments as close to normal as possible). The basic idea behind normalization is that people with special needs should be viewed in the ways in which they are the same as other people rather than in the ways in which they are different. School can be seen as a microcosm of the larger society. As Canadian society has moved toward a more inclusive view of all individuals, so too have schools moved toward inclusion.

What are the controversies?

Inclusion is not without its controversies. As the movement has evolved, the distinction between regular education and special education has become blurred. More and more regular classroom teachers have been expected to program for the children with special needs. This has caused a lot of problems because many of the teachers have not been trained in special education. Even current teacher education programs do not provide a significant amount of instruction in special education. Another issue of concern relates to the education of the children without special needs. Some parents of these children feel that their children's education has been weakened due to inclusion. Research has shown that this is not the case. The educational attainment of children in classes where there are children with special needs is not significantly less than in classes without children with special needs. One may even argue that children in inclusive classrooms learn more as they begin to understand and accept diversity.

What are the characteristics of an inclusive school?

All children can succeed in an inclusive environment. Research tells us that effective inclusive schools have the following characteristics:

Supportive Environment

A school's culture and climate refer to the school's atmosphere, values, and policies. These lead to particular expectations and behaviors on the part of staff members and students. An effective school is one that has high expectations for its staff members and students, provides caring support for students and staff, and provides opportunities for their participation in the classroom and broader school setting. Feelings of acceptance are promoted by a welcoming school atmosphere and a school culture that accepts different kinds of behaviors in the classroom and does not make assumptions about children's abilities.

Positive Relationships

Teachers encourage the development of relationships through their decisions about where to seat children in the class. More formal actions include exposing children to role models and setting up buddy relationships. Many strategies can be used to promote the social inclusion of all children.

Feelings of Competence

Children need to believe that they are competent at something and that others believe that they can succeed. Children can develop a strong self-concept in many different areas. Children can feel competent in areas related to their social, athletic, moral, and creative abilities and qualities, as well as their ability to learn. By understanding their areas of strength, children come to value themselves and develop a strong sense of self-worth or self-esteem.

Opportunities to Participate

All children require opportunities to participate in activities that allow them to understand societal expectations. They can then acquire the physical and social competencies needed to function in their school, home, and larger community. As well, they gain an understanding of their strengths and their interrelationships with others. When children are valued, listened to, encouraged, understood, and believed in; they will be successful.


Blogger Jannalou said...

When I was in elementary school (in the 1980s), there were a couple of students in my class who got pulled out for their special education stuff. I was friends with one of them, largely because his family went to our church and he lived nearby.

When we moved from that town (Brooks, Alberta), one of my parents' friends helped us pack. He was a man, probably in his twenties (I was 11 so all adults were really just old), who had some kind of developmental disability.

It's probably my parents' "fault" (as if we need to assign blame) that I now care as much as I do about inclusion and acceptance. I remember, when I was frustrated with my friend from school, Mom would explain that I needed to have more patience with him because he was different. She mostly put that difference down to him not having a father around, but I wasn't exactly stupid - I knew he was different intellectually, too.

I have a little "book" I wrote when I was about 11, that's about that friendship. If I can find it, maybe I'll do a blog post about it.

10:08 AM  
Blogger Kristina Chew said...

An Unexpected Joy is a great read. We're certainly glad that Charlie can attend a school in our town; I do think that inclusion can be interpreted according to what each child needs, and that the proper supports must be in place for it to be effective. (A conclusion reached after many optimistic efforts did not work out, which does not mean one cannot try again.)

10:42 AM  
Blogger María Luján said...

Hi Estee
You said
"When children are valued, listened to, encouraged, understood, and believed in; they will be successful"

For me, only if their nervous system is prepared to receive and process information in a non- totally distorted way. And this has nothing to do with proper support form parents/school, this fact has to do with health status.

In general, every time I read about inclussion is too much vague about the true situation to face: children overwhelmed by sensorial issue, overwhelmed by stress/pain, overwhelmed, in conclussion.

I do think that a different overall approach is needed from the medical, parental and societal point of view to achieve sucessful inclussion and , in a final reading, it will depends about how the child can manage this situation, with all the complexities it has accordingly to the age- and much much beyond of acceptance for me.

If you are interested, I can comment about our personal experience with my son.
Ma Luján

11:35 AM  
Anonymous Jsomers said...

I agree inclusion is about how you feel not a place

12:23 PM  
Blogger Autism Reality NB said...

My son, who has autism disorder, was removed from his mainstream class in Fredericton, New Brunswick at our request. In the mainstream classroom he was attempting to learn a different curriculum than his classmates, at a different level intellectually, and by different methods of instruction. The activities of the classroom were overwhelming to him and he learned very little. At the end of the school day his hands and wrists were often marked with self inflicted bites. Since his relocation to an adjacent vacant classroom where he receives his ABA based instruction in quiet, without sensory distraction, the biting has ceased and his learning has progressed significantly. He visits the mainstream classroom for periodic defined activities which provide for interaction with the other children.

The Autism Society New Brunswick advocates for inclusion in a real learning experience. ASNB calls for flexibility in terms of placement of autistic children in the school system. Look at what is best for the individual child as determined by the evidence in each case. The philosophy that mainstream classroom works for all children, including all autistic children, is not supported by the evidence.

Cambridge Universtiy Professor John McBeath was interviewed about a study of inclusion in the UK which he co-authored, Cost of Inclusion, Cambridge University Press, 2006 and stated that: "Physically sitting in a classroom is not inclusion. Children can be excluded by sitting in a classroom that's not meeting their needs. … You might call it a form of abuse, in a sense, that those children are in a situation that's totally inappropriate for them."

The appropriateness of the full inclusion model for educating autistic children in particular has been questioned by experts in educating autistic children. Mesibov and Shea (Full Inclusion and Students with Autism, Journal of Autism and Developmental Disorders, Vol. 26, No. 3, 1996), reviewed the professional literature and concluded that: “Although the goals and values underlying full inclusion are laudable, neither the research literature nor thorough analysis of the nature of autism supports elimination of smaller, highly structured learning environments for some students with autism.”

As parents of autistic children, like all parents, we are responsible for ensuring that our children receive the best education. That means looking at what works for each child not putting them all in a mainstream classroom because of a philosophical belief no matter how attractive that philosophy looks on paper. My son told me he did not want to spend his instruction time in a mainstream classroom. He told me with bite marks on his hands and wrists. He has also told me that he approves of the decision to move him to a quieter environment near his peers. His bite free hands and wrists and his improved learning tell me that.

Harold L Doherty

Fredericton, New Brunswick, Canada

Facing Autism in New Brunswick

4:56 AM  
Blogger Autism Reality NB said...

I posted on this topic some time ago but you apparently chose not to approve it for posting.

May I ask why?

10:19 AM  
Anonymous Anonymous said...

I teach in an Elementary School and I teach in an Autism classroom. These programs just started in my county and my program has only been here for 2 years and already I'm being pushed to include students who are not ready. I know my students and I would not hold them back, I expect more from my students then anyone else does; I truly believe that! I just don't understand why they spent so much money on these programs and then turn around and say that because a child is included for L.A. for an hour and then Math for an hour, that he is ready to go to his home school without the support of an Autism classroom to come back to. Why are they taking supports away, why do they push for everything to happen so quickly? I don't want my student to fail; I feel that I have worked so hard to get him at this level and he is still so fragile and the school system will ruin his progress. I've only had this child for a little over a year and he came to me without being able to sit for 5 minutes and he would scream the whole time. Now he's included for an hour at a time! Why do the teachers who work with the students have so little say? I always find myself siding with the parents and yet I could get into so much trouble - I could lose my job. I hate this part of my job, just let me do it to the best of my ability and believe in me to do the best for MY students because I am the one who knows them best; not some person higher up who never even comes into my classroom! I love my job and I love my students, but I feel eventually I will be pushed out of this field because of all the pressure from supervisors. I hope parents understand that sometimes we are on your side, but we are not able to show it. This is my 5th year and I already feel discouraged and burned out from all the politics. I'm already scoping out another form of work outside of Public Schools.

2:16 AM  

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