Thoughts About Inclusion, Special Ed and Loneliness
Over the years, I've gone from being a tremendous inclusion advocate to questioning its value for some children with autism to really wondering how often it could possibly work well (except in the most unusual situations). After all - children with autism learn differently, behave differently, socialize differently, talk differently... and even with support, they will always be... different. And in a school setting, differences are tough for everyone.
Differences are tough on the students - even those who try hard to include a child with autism in typical play will find it difficult if not impossible to do so. They're tough on the teacher, who is already overloaded with expectations and test preparations. They're tough on classmates' parents, who aren't quite sure what to do about including the child with autism in typical birthday parties, soccer games, and field trips.
And, of course, differences are hard on the child who is different - especially when the differences are subtle. In some ways, I think the children with very high functioning autism and Asperger syndrome have it worst. They're included - but they're rarely part of the group. They look similar, but never the same. And it it's so very hard to figure out how to help them master the subtleties of expression, intonation and body language that make the critical difference between weird and cool.
Now, some people advocate inclusion because, after all, kids with autism can't be separated from the "real worl" forever - and it's best to get used to the real world as soon as possible. I, however, disagree with that perspective: school, in my opinion, is not the "real world" at all. In typical life, we are not segregated by year of birth. We're not expected to be good at everything, from math to football. We're not expected to "fit in" to a random community just because it happens to be local. As adults we have choices.
So why not prepare our kids with autism to live in the real world they'll inherit as adults - rather than preparing them for the complex, difficult, and ever-changing world of the classroom? Why not worry less about helping them to become "typical students," and more about helping them grow to become competent, happy, creative adults?
What are your thoughts on this issue? Join the conversation!
Comments
It’s true that school isn’t the real world, but while there are distinct differences, there are also many similarities. My work partner and I sometimes marvel at how the behavior of some of our teammates mimicks that of elementary school age kids. We still see things like envy, tattling, apple polishing, favoritism, etc. Our experience in working in such social conditions has helped us learn to survive and flourish in such an environment. We have learned how to effectively deal with the diverse personalities that are forced to work together under the same roof. Inclusion, can therefore be considered to be a kind of preparation for for life as an adult.
Inclusion has many benfits. That being said, however, I still agree with Lisa. It is imperative, and of supreme importance, that an individual’s strenghts are discovered and capitalized upon. There is nothing more important in life than spending that life in an occupation that is intrinsically rewarding and a good fit for that person’s individual strenghts and interests, and being surrounded by co-workers with whom they have common interests and perspectives. If inclusion is being done in such a way as to prevent this goal from being fulfilled, then I would quickly fix it, or abandon it altogether. Self-fulfillment and personal growth in ones occupation and areas of interest are of utmost importance.
“Including children with special educational needs in mainstream classrooms can be “a form of abuse”, a professor of education has said.
John MacBeath of Cambridge University was commenting on a report he co-wrote for the National Union of Teachers.”
Inclusion should be the answer but ‘one size fits all’ is not the way to implement it. Teaching staff should be free to teach, but when they have multiple cases of pupils with complex and specific needs to take into account the system heads towards meltdown, especially when the same staff have received little or no training to deal with such needs.
It is bad enough sending a ‘normal’ child to mainstream with the worry of drugs, weapons, gang culture and peer preasure; sending a child with an ASD into the same furnace is a major worry.
well, for kids, school is ‘their’ real world. as that child grows, they enter ‘new’ real worlds. regardless of inclusion or self-contained, school is a teaching step for the real world, really. it’s all more or less baby steps up a ladder, preparing for adult life.
I am not a big fan over either inclusion or self-contained but with either, how those instructors help the child with autism to be included will help greatly. showing by adult example to al students is here it’s at. also over all attention needs to be brought to typical peers that different doesn’t mean they’ll catch it. but kids are funny that way that they pick and choose and ignore peers for the silliest reasons anyway, making it even harder for that child with autism or asperger’s. some kids with autism are hardly aware of other peers, and would rather not have them about.
as adults in the real world, think back to school days. I know at my jobs there is always one or two of which we just never make that click, just like in school. some co- workers are always harder to get along with. what we do learn in school greatly affects how we deal with people in that adult world. we learn this when we’re young.
I don’t advocate for inclusion, just merely let other’s know it is their child’s right. you really have to advocate what it right for that child. what’s right for my child may not be he same for another.
Inclusion may be the right of the every child but the question we should be asking is, is inclusion right for the child with autism? My own personal belief is that children with autism need intensive teaching about themselves and what makes them tick. How can we hope to understand other people and the world we live in, if we can not understand ourselves? Of course people with autism must live in a mainstream world but in order to do so I feel that many of them require time out of the real world to equip them for life in our mainstream world. Inclusion was a nice idea but in practice it has had horrific consequences for some children.
Children with autism are wired differently and just sitting them next to a bunch of neuro-typical peers will not alter this. A PC without the windows programme will not pick it up if sat next to a PC that has windows installed. Children with autism need to be taught the things that come naturally to their neuro-typical peer group. This involves a great deal of time and energy and one to one teaching. I opted to home educate my two autistic sons and the outcome has been amazing. In many ways they are miles ahead of their autistic peers. Both have friends, something many autistic children do not have. Both attend clubs and sporting activities and both are accepted for being themselves. They are not on show in a classroom full of children who are finding it hard enough to understand who they are never mind the weirdo kid sitting next to them. Inclusion is a feeling not something that we can say has been achieved just by sitting in a classroom full of thirty other children.
It is all about individual needs. Consider though, how is a child with autism ever going to learn to be a social person if they are not included?
If my 12 year old son were not included with typical peers, he may well still be playing with Elmo dolls instead of gameboy.
In school, inclusion does not mean dumping the kid in a classroom and letting him fend for himself. Inclusion is being a vital part of the community with supports and services needed by that individual. According to IDEA, that is the right of a student in their least restrictive environment. An environment where their strengths are discovered and capitalized on, just like the all the other kids in the school.
And how do we expect society to accept people with autism if they are not included? As mentioned by Sandy, this isn’t something that typcial kids can “catch”, but do they know that? To educate society, starting with the school community, about autism is the first step in ensuring an inclusive community where all belong. You can;t do that by sending a kid to a segregated setting.
That being said, some school districts, administrators and teachers may not be versed in successful inclusion. It then becomes imperative that the district be coached and trained in inclusion, with backing by federal law, and teachers are supported in their role of including a student with autism.
I deal with many distressed parents who’s ASD kids attend mainstream. When you have head teachers claiming ‘there is nothing wrong with the child’ or ‘we need to normalise them’ or ‘you’re just being an over-anxious parent’ it suggests that even head teachers haven’t took the time to learn about the condition; that being the case, what hope is there for the rest of the school? In the meantime, we have children who are completely out of their depth and unable to cope with their learning environment.
Can you normalise a child with ginger hair or blue eyes or blonde hair? They are accepted for what and who they are (mostly) without any plans to make them all have brown hair and green eyes in order to fit into society? Many have tried those tacticts in the past and failed.
One size does not fit all because we are all individuals, or have we all to be assimilated into the collective?
Unfortunately, mainstream hasn’t got the capacity to treat every child as an individual.
I did not remove my sons from their mainstream classroom to exclude them from life. I removed them to empower them and to prepare them for life and also because I wanted them to know that it’s OK to be autistic. I do not know how it works in anywhere other than in the UK but over here our children are sat next to their NT peer group with the AIM of them catching some of their NTness. Of course it’s never going to work but that is the expectation. My sons are not mixing with their NT peer group in school but that has not stopped them from developing or mixing. We mix in home ed circles where there is an ever growing number of autistic children. My youngest son plays with the local children on a daily basis and keeps up with them. He is accepted by them and they are all aware that he has autism. They are also aware that he is a regular kid just like them. Autistic children do not pick up social skills they need to be taught them and here in the UK that just does not happen.
I am 51 years old, live in Montreal, Canada and have high functioning but severe autism along with Tourette’s and personality disorder. I belong to a little known category of intelligent but otherwise severely autistic adults.
When I was diagnosed with autism at age 3, my parents went into total denial and raised me as a normal kid with no regard at all for my special needs. They sent me to a regular school as a regular pupil with no special assistance, expected me to function as well as my normal sister in all settings and punished me for not making friends and other abnormal behaviors.
I am now struggling to keep up with the adult version of mainstream: life in the community, regular job and full load of responsibilities. Although my job was designed to accommodate my needs and a co-worker volunteered to act as my advocate, it is now more like a regular job with the same pressure and stress everyone else faces. I no longer have an advocate because the one I had left and no one else was interested. Supervisors are satisfied with my work, but I am not coping with the stress and am burnt out (jobs in Quebec are so stressful even nondisabled staff are getting sick and burning out). Poor coordination, visual-spatial skill problems and sensory irritability conspire to render household chores next to impossible. They irritate my nerves so much they set off rages. Although my work is also hard, it’s not as frustrating as chores because it doesn’t just draw on weaknesses the way chores do.
One would think that throwing me into the world and leaving me to muddle through the knocks of everyday life would strengthen me and turn me into a fully functional adult. Wrong! I am a burnt out nervous wreck who’s always in a bad mood. I can’t tolerate full loads of responsibility. The overload makes me chronically irritable, adds to my hostility and leaves me with no mental energy to practice the few social niceties I know.
Looking back on my life, i realize I was not only mainstreamed but thrown into one of the toughest mainstream settings. As I kid I got the screamers for teachers. As an adult I keep getting tough bosses who don’t know how to treat an autistic worker. Montreal is an especially rough city for fragile people like me. I am not only contending with all these hard things but am doing so with no support. My family never created a support network to provide for me as an adult because they thought I’d grow up to be a normal adult. Government services here are next to nil. Unable to handle more than a few half days of work a week, I can’t earn enough to hire help at home.
Although it’s wrong to warehouse autistics, mainstream isn’t for everyone either. Autistics who are mainstreamed should get the supports they need to cope. I was just thrown into it and left to sink or swim.
Marla Comm
Montreal, Canada
May I just say good luck to you Marla, you deserve a medal for even trying to cope with it all.
This underlines a basic problem in society - everyone is expected to comply with the norm (whatever that may be). You will go to school! You will hold down a job! You wll act and behave in a particular way! You will have a mobile phone! You will wear what the celebrities are wearing etc., etc.
The individual is not recognised, nor is it recognised to be an individual.
No-one actually takes the time to ask the individual what they want; what they need; how they feel or how they are coping, they are just expected to get on with it, to sink or swim.
Our SEN Code of Practice declares that the opinion of the child should be taken into account when deciding provisions, unfortunately that opinion is far too regularly ignored or not sought at all, but lets face it adults know best.
We constantly ask our son (home educated for over 5 years) whether he wants to go back to school. One day he may well say yes, but only when he feels he can cope. Our job is to prepare him for that eventuality so that we know and he knows that he WILL cope with the rigours of mainstream.
Until that day arrives, we will continue to teach him the skills that will keep him safe.
One of the biggest issues I have faced is the opinion held by many professionals that the level of autism is minimised if the level of intelligence. My sons are both highly intelligent but are severely affected by their autism. I do not think that this is as rare as some people would like to believe. I believe that people with AS and HFS are often crippled by their autism because they are their levels of awareness are so high. We have found that given the right enviornment in which to learn our sons are now less affected by their autism. This is simply because their needs are being met. This does not mean however that we wrap them in cotton wool. Far from it but we so not leave them alone in a raging sea without a life jacket.
If not inclusion, what model? Are you advocating mostly homeschooling or going to a school just for children with ASD?
Since there is also a variation among abilities of kids with ASD, how would curriculum be determined, so each would be challenged?
My school also does not seem to really get my daughter. She is doing alright, but I don’t think she is getting as much in the moment social skills as would probably be helpful.
Most of what I see written about children with Aspergers is dealing with the lack of social skills and being very bright. My daughter has aspergers, but she seems to fall in the average intelligence category, so she would not end up in a gifted program or
be able to use that as a strength which is often suggested.
I totally agree with you. My daughter was included all the way up to fifth grade and although she had no trouble with academics, she has terrible social skills. Most schools refuse to work on social skills anyway. We are now homeschooling and everyone keeps saying but she needs to be with her peers and get used to being around other people. She was around them for six years and never got used to it. She was just more stressed and unhappy. Now she is much happier and I couldn’t be happier (no more daily phone calls from the school)
I thought a special classroom would be the best thing for my ASD son when he was in preschool, and in some ways it did help him.
That being said, when a consultant I hired went to his school to observe him, the scene she documented read like a page from ‘One Flew Over the Cuckoo’s Nest’.
She described a scene with a ration of at least three adults per child. Yet almost all of the interactions she recorded were adult-to adult, with the notable exception of adults reprimanding children.
She noted no instances of positive reinforcement from an adult to a child in over 90 minutes at a time.
And she documented one heartbreaking incident where an adult with food made a horrible comment to a child who was looking at the food.
After that, no matter how bad, I DO NOT want my child in a segregated closed environment outside the mainstream. This kind of environment totally lends itself to development of exploitative relationships between caretakers and children.
I’m so sorry to hear of the negative experience you and your child had, Maria. I encourage you to reconsider a “blanket” exclusion of dedicated settings.
There is a place for instruction that is dedicated only to individuals with ASD. The key is providing focused services with an emphasis on partnership with and support of the student with ASD. We need to start with what the student HAS, instead of following the typical educational model of focusing only on our kids’ deficits. Our kids have great talents and abilites that may not “fit the norm,” but are nonetheless invaluable. The “right” environment is the one that takes my child’s strengths and builds on them.
Social skills CAN be taught in a “dedicated” setting when the adults/instructors are willing to facilitate positive interactions rather than a punitive environment for “social mistakes.”
Jennifer as much as I agree that social skills ‘can’ be taught in a dedicated setting. Those settings simply do not exist where I live. Children with AS and HFA are ‘made’ to fit into mainstream and unless the special school is ASD specific then our children are once again out on a limb.
However we have so few ASD specific schools here that parents have to fight one and other for spaces. A child will not be placed within such a setting until it has failed and failed badly. In mainstream they are expected to behave in a normal manner. If they flap or sit under a desk to escape sensory overload they are often punished, usually by excluding them from the classroom. What do you learn in a corridor. One parent I know has a son who was taught in a corridor for 6 years. That is not inclusion.
What you speak of should be available for every child with an ASD whose parents would like to chose that kind of setting the reality is that it does not exist.
While the arguments for and against inclusion in a school setting are of interest, it must also be noted that an Asperger’s sufferer faces many of the same problems on the job as in school. There is the need to interpret non-verbal language, respond appropriately to jokes, defend onself against unfair criticism and many more issues. Unfortunately, the resources that may be available in a school setting are no longer available for an adult. In our middle-of-the-country location, adults get a bit of help from vocational rehab but not the sort of help needed to cope with the challenges of a job.
As neither of my sons are ill they do not suffer from AS their autism is part of their being.
If the situation is bad for children then it is much worse for adults and that is why our children need to be taught things like none verbal communication and how to ‘get’ a joke from a very early age. It can be done.
My eldest son now an adult had a late diagnosis and we lost a great deal of time with him. We should not wait until a person is an adult to teach these things. It can be humiliating for that adult and in my opinion can lower an already low self esteem. It’s taken a long time for my adult son to grasp these things but he is almost there. The youngest now aged 10 has been learning about himself and also about none verbal communication and how to ‘get’ a joke - or at least understand that some people do find things that he does not funny - from being 3 years old. It’s been intergrated into his studies in such a way that he has not realised that he is learning these things. I do not want to make a point of his difference just empower him.
Adults are treat dreadfully in the UK. That is why some of us are now trying to do something about this.
When you’ve met one child with Aspergers, you’ve met one child with Aspergers. (OCALLI)
Yes, our children have many traits and special needs that are similar, but the only trait they have in common is that each is such an individual. As such, we need to determine what school setting is best on a one-on-one basis.
Is school a wonderful, including, warm environment for any child? Perhaps for the Prom Queen or sports hero. For the rest of us middle of the road students and nerds, school was sometiomes a cold, cruel place to learn to survive the realities of the real world, the sometimes harsh world. My daughter is mainstreamed with lots of help. She is thriving academically, and has a few friends. Yes, she would be protected, she would learn more, she would have a lower stress life, she would have lots of positive experiences if we homeschooled. But she would not learn how to survive in the world when we are gone and she has to live on her own. A hard lesson? Yes. The right one for my daughter? Absolutely. The right one for someone elses child? Perhaps not.
I am offended by the professor who said mainstreaming is abuse. How dare he judge what is best for my child without seeing her, observing her, evaluating her situation. Hitting is abuse, screaming at your child is abuse, neglecting your child is abuse. Trying to do everything in your power to equip your child to thrive as an adult is not abuse. It is love.
Wow, this is one close to the heart. I am for inclusion, but working in the school system with students with varying degrees of disabilities, the lonliness factor that these kids suffer, and as a result, a lot of them get depressed because of it is…HUGE!
Inclusion is what it is, depending on what the district your child is in. However, at it’s best, it appears to only cover the academic side of school, with social integration being a part of it as well. When these students have typcial social problems, (and I am also thinking of a non-verbal quadra palegic girl who has surpassed the IQ level of everyone in her grade class), there is little to no couselling provided because these kids already “zap” so much of the system that to get people trained to work with their needs costs yet more money.
In working with the girl in the wheelchair, she told me through eye gazes that she was feeling really depressed. I asked her why, and after playing a round of 20 questions, it was discovered it was because no one her age would talk to her, she was not invited for sleep-overs like others her age, no one bothered putting make up on her, she couldn’t use the girls bathroom and chat like the others do and no boys would even think of asking her out. I offered to be there with her to help communicate when I told the resource teacher about this, and after waiting for results that never came, I talked to the school counsellor and youth worker myself about it. They had no idea how to approach the situation because they had no skills to do so.
Is this situation only unique to this particular student? Nope, it seems no matter how high-functioning you are, if you have a label other than “human being” attached to your school file, staff are poorly trained to help the student work through their problems. This one girls’ problems were as typical as girl problems could get, yet help was shut off because she couldn’t talk. Higher functioning students get treated the same way.
Mainstreaming is NOT abuse, but the school community and society as a whole needs to realize that these kids have emotional needs that must be met and dealt with too that are in no way different than their peers. The only thing that makes them different is the way they may talk or communicate, and it’s up to our school systems to train people to work with them.
Caroline
Inclusion is not for everyone, but is can be appropriate for some IF DONE PROPERLY. Our district has a wonderful program, an inclusion preschool with 1/2 and full day programs (with speech, OT, PT), and 3 out of our 6 elementary schools have one inclusion class per grade, with one regular ed. teacher, one special ed teacher, and as many aides as are required for each class. Some students receive a one-on-one aide. IEP’s are reviewed on a regular basis to modify an individual program if necessary. If something isn’t working, we change it! For some, that may be a seclusion class, or home schooling supported by the district. My son went to the preschool for almost 3 years and now attends morning inclusion kindergarten (supported by sp. ed. teacher and aides) and afternoon special program. One of the reasons why I like this set-up for Kyle is that he will be allowed to progress academically at his own pace (he’s hyperlexic and is showing mathmatical ability) but it gives him an opportunity to see other “normal” kids in action. Like it or not, for those of us with high functioning ASDs or aspies, they will grow up to get jobs and be a part of society. I’m not saying “normalize” them. I am saying that they need to learn enough about themselves to know how to modify their behavior IN PUBLIC in order to get a job and support themselves as much as their abilities allow. To do that, they need to learn early on what is appropriate behavior and what isn’t. We are big on Please and Thank You in our house. Kyle’s therapists and teachers over the last few year have commented on how much his politeness will help him in the future. He needs to PRACTICE this and other appropriate behaviors with his peers. It doesn’t mean he needs to be friends with everyone in his class. If he finds one friend, I’ll be thrilled! I don’t want to change my son’s inherent personality, I just want to help him adapt to a world that WILL NOT adapt to him. If, in the future, we decide that inclusion is no longer appropriate, we’ll pull him. Basically, I’m just saying don’t count it out. If it’s a good program it may be worth giving it a shot, just to see if it works. If not, try something else. Never stop till you find what is right for your child and DON’T GIVE UP!
The professor in the UK who made the statement about mainsteam and abuse actually said that for ’some’ children with special needs sitting in a mainstream classroom was a form of abuse. Here in the UK we have pupils with ASD self harming and even attempting suicide because of inclusion and however hard it is for some people to accept that in my eyes means that the system is abusing these children. Unless you sit in these classrooms then you simply can not say that mainstream is NOT abuse. The repost was commissioned by the National Union of teachers who agreed with the findings. It may be helpful to read this article and see it in its true context. Here is the link http://www.tes.co.uk/2247492
A well know ASD psycologist who works with adults with ASD in my area, asked 200 parents sitting in a conference if they were asked to choose which was more important to them a working life or a social life what would they choose? 98% of the parents chose a social life. The psycologist said that this was also true for people with AS but sadly most had never been taught or given the opportunity to have a social life that was right for them.
Thank you alkl for your insight. People like you help me in my day to day teaching duties of young children. Half of my class have develomental delays and half do not. Your ideas give me something to think about and to talk with my parents about.
I’ve talked to many parents who say that inclusion seems to work best in preschool. For a smaller group of kids, it continues to work through some or all of elementary school. Often it’s the middle school and high years that cause the most significant problems.
Small children are more accepting of differences because there is less of a gap between their behaviors. My son did pretty well in an integrated preschool, but was assigned to a self-contained class at kindergarten (mainstreamed for music). But by the time he was eight and functioning at a 2 1/2 to 3-year old level, the gap between him and NT kids was much bigger. He just didn’t have enough in common with the other kids to make for a true friendship amonng peers. Most NT kids were and are nice to him after I explained his difference — and that’s fine –but it’s not the same as relating at the same level.
Now he’s 13 and functioning at about 3 to 6 year old level depending on the task/situation.
He is extremely different than other kids his age — what he thinks about, what he can do, etc. His brother is two years older and when his friends are over, they are very nice to Jalen, but the scene is more like a preschooler among friendly teenagers than a group of teens.
Eventually, for various reasons, neither inclusion or self-contained classes worked for him. He is now homeschooling and doing a whole lot better — academically as well as socially. For us, attending school kept him from developing his social/academic skills. But of course, everyone is different. Some kids (I think the minority) do well with inclusion throughout the lifespan.
Cynthia
Carole Rutherford said that ASD adults in the UK are treated badly. The same is true for adults here in Montreal, Quebec, Canada. I am one such adult who commented earlier on this topic. I have been struggling in the adult version of mainstream, ie normal job, chores, full load of responsibilities, and am totally burnt out from the stress.
I have no support at all and have been trying in vain for years to get support services like help with housekeeping and volunteer drivers when weather is unfit for biking. Quebec’s government run health and social services network (CLSC) does nothing for me even though I have a social worker. All she and other social workers I tried do is give me lip service or excuses like “I didn’t get a chance to call…”
People think I’m lazy, but they don’t realize that I am totally burnt out from years of doing these difficult things without any support at all. merely getting through the day uses up all my energy, especially during this turbulent and unstable millennium. coping with chores and my increasingly difficult job in a regular government run workplace is turning me into a nervous wreck.
Society expects its intelligent ASD adults to lead independent lives, work, look after the same responsibilities typical adults do and thinks the best thing for them is to throw more and more responsibilities at them. While this may work for some, not all can tolerate the stress or keep up with everything without support. What’s the purpose of pushing the more disabled people like me when all they’re going to do is burn out and turn into bitter nervous wrecks and end up having to cut out more and more of those responsibilities just to protect their health and keep them from breaking down completely? Adults like me can function better with support, but society is unwilling to provide the kind of support they need. The whole thing is unfair.
Marla
Maria I fully understand what you are saying and support you – even if that can only be in cyber space. I have heard that Canada is a less than wonderful pace to live if you are an adult with autism.
I was having a net based discussion with someone who described themselves as an independent special needs consultant in primary education. They stated that their work supported inclusion and was based on a holistic approach to addressing individual children’s needs. The discussion was started by this person who wanted to know why so many parents in the UK were now taking their children out of the system to home educate. The word holistic to me says that ‘all factors are being considered’ when teaching that child’ After quite a lengthy discussion where many of us interjected the person who started the discussion decided to end it after informing me that their perspective was, that support systems generally are limited in resources and are designated for use according to a priority system. Any child who is achieving highly in school, and perhaps above that of his or her peers, cannot instantly be seen to be a high priority for support. The resources are there to support those whose life opportunities are very limited - and I see too many individuals, sadly, in my usual working week, who fit that category.
Finally they said that they once heard a leading ASD light speaking at a national education conference, talking about ASD who said that in all probability, Bill Gates has ASD - but does he need anyone’s support to help him overcome this??? They went on to advise the posters that they should not make the problem too big for our children and to keep things in perspective! After this we were unable to respond as they discussion was closed by the poster. Had it not been I would have said that I also heard the leading ASD light speak and they also said that if a child is doing well with support structures then you leave those structures alone because they are needed to enable and support the child. They also said that it was criminal that a child had to fail and fail badly far too often before anything was done to help the child.
There is nothing at all holistic about an approach that talks about making too much of the persons problems and keeping them in perspective? A high level of intelligence does not diminish the level of autism/AS in fact sometimes it heightens it. If I and many other parents know this to be true why do so many professionals ignore it and try to make our children and adults fit into NT boxes?
Carole, thanks for your support. The only kind words I get are from people like you who thousands of miles away. You are right about Canada. My province, Quebec, is the worst of them all for a number of reasons I’d like to share with you in private if I knew your e-mail address.
In addition to parental denial, the high marks I earned in school are reasons people now overestimate my abilities. Except for math, where I excelled, I didn’t deserve the marks I got. I was actually very weak in all humanities subjects like English literature (analyzing fiction), French, history, and geography. Even in my best subjects I had weak areas. Uneven ability is common in ASD. Thanks to a lax curriculum and grading system, I got high marks even though I shirked most of my work and learned nothing at all. I didn’t submit a single book report (we had to read a book each week and write reports) and snuck my way out of all group projects, but the teachers didn’t even notice. In elementary school we needed only 1 good test and 1 good assignment to get a high mark. Highschool finals were all multiple choice and counted for 100% of our mark if we did better in them than in classwork and exams combined. Looking at my reports, one would never know I failed all class tests and assignments in history, English lit and French. I guessed my way through the exams and passed!
In classes with 35 to 40 students, only the worst troublemakers got attention. I was a daydreamer with next to nothing attention span, but hid behind the tall students and went unnoticed. Phys ed teachers sent me home with notes about the motor skill abnormalities they noticed, but I just threw them out. No one ever bothered to follow up on the notes. My parents cared only about academics and considered gym an “extra.”
Yes, I also read that celebrities like Bill Gates had/have ASD and think all that romanticizing does severely affected adults like me a disservice. People like Bill Gates may have some ASD traits, but lack the impairments needed to really be thought of as having the disorder. A psychiatrist named Dr. John Ratey coined the term “shadow syndrome” for people who have subclinical forms of neuropsychiatric disorders and are atypical but able to function independently. I think that at least some of the extremely high functioning adults like Gates have just the shadow syndrome form.
I also notice that North American media romanticize ASD by publicizing only stories of autistic high achievers. After hearing these stories, the public comes away thinking that all ASD people with normal or above IQ’s are whiz kids facing bright futures filled with advanced degrees, careers and other achievements. While some ASD adults do well, others like me don’t. It’s sad that no one wants to hear about them.
In MAAP, a USA newsletter for high functioning people with ASD and those who have such people in their lives, I saw a conference speech summary that also mentioned the importance of not taking away supports that help an ASD adult or child function. The speaker said that removing an ASD person’s supports and expecting him to continue functioning as well as he did with them in place is analogous to finding a lens prescription that corrects a vision problem, leaving one’s glasses at home and expecting to see just as well without them.
Marla Comm, who also suffered an emotionally abusive childhood with parents in denial who devoted themselves to trying to literally make her an NT