Showing posts with label Aspergers. Show all posts
Showing posts with label Aspergers. Show all posts
Friday, April 15, 2016
'I feel like a castaway:' 10-year-old boy with autism
Thursday, February 11, 2016
Assisted suicide study questions its use for depression, autism
A study published yesterday about doctor-assisted suicide in the Netherlands for patients with depression and other conditions, including autism, raises alarming questions.
The JAMA Psychiatry study looked at 66 cases between 2011 to 2014, including two involving people with autism. Depression was the most common diagnosis.
The practice of helping patients to die was initially limited to those with terminal illness who were mentally competent and had intractable suffering. In the Netherlands and Belgium it's been expanded to include psychiatric patients.
The researchers raise several red flags about their findings.
In one-quarter of the cases, doctors disagreed about whether criteria in the areas of 'unbearable suffering,' competency and futility had been met, but the deaths proceeded.
Most patients were women (70 per cent) and in over half, doctors cite loneliness as a factor. For example, "The patient indicated that she had had a life without love and therefore had no right to exist" and "The patient was an utterly lonely man whose life had been a failure."
Distorted, all-or-nothing thinking is common in depression, but these statements appear to have been accepted as fact.
In 56 per cent of cases, patients refused at least some recommended treatment, calling into question whether the condition was in fact intractable.
In more than a quarter of the cases, patients sought help from a doctor who wasn't a psychiatrist and hadn't been involved with their care. Typically, this was a physician with a mobile clinic funded by a local euthanasia advocacy group.
The scientists conclude that the granting of requests for assisted death "involve considerable physician judgment, usually involving multiple physicians who do not always agree, but the euthanasia review committees generally defer to the judgments of the physicians performing" assisted death.
In their discussion, the authors note that in a recent study of 100 people requesting assisted death from a Belgian psychiatrist, 19 per cent had autism.
A JAMA Psychiatry editorial that runs alongside the Netherlands study finds the results troubling.
"Will psychiatrists conclude from the legalization of assisted death that it is acceptable to give up on treating some patients?" Dr. Paul Appelbaum of the New York State Psychiatric Institute asks.
"There is also understandable anxiety about the secondary consequences of an assisted death option for people with mental disorders, including inducing hopelessness among other individuals with similar conditions and removing pressure for an improvement in psychiatric and social services."
Indeed, given that loneliness was a common theme, Dr. Appelbaum questions whether assisted death "served as a substitute for effective psychosocial intervention and support."
The study authors note that requests for assisted death to relieve suffering from depression and other psychiatric conditions require special scrutiny, given that these conditions "contribute to suicides, can sometimes impair decision-making, and are stigmatized."
Tuesday, June 2, 2015
Seeing 'as if for the first time'
Lately I started wondering how my parenting may have added to the challenges of my son’s anxiety disorder, which goes hand-in-hand with a primary diagnosis of Asperger’s syndrome.
He is a 21-year-old adult, first diagnosed with autism at age seven. Back then, I spent my days consumed with learning about all things autistic—attending workshops and meetings, poring through books and staring at my computer for hours on end—seeking out anything that would secure his happy future life. The information implied that we could “fix” or shape things to come, perhaps turning him into a superstar with autism like Temple Grandin or Glenn Gould.
Parents of newly-diagnosed children with autism are submerged under an avalanche of advice and information about ABA and IBI, social skills and social stories, sensory diets and gluten-free diets… Stop me now, please!
No wonder I woke each morning in a mild panic, feeling there was work to be done. I brought that sense of mission to my son while overseeing each and every step of getting ready for school for 15 years. After drop-off, I imagined challenges he faced that I could not witness firsthand. Always wondering if I would get “the call” from the school. Then back to the job of plugging “Asperger’s” into another Google search.
For all of my son’s gains through baby steps and giant strides towards adulthood, I still flash back to moments when I broke some cardinal rule of good parenting, and feel that surge of regret over something I can never undo.
I don't like looking back—too many “should haves.” Looking forward is something I try to avoid, however unsuccessfully, with its scary list of things I should be doing. Being in the here and now seems to be the least punishing of choices.
These days, I let information through selectively by email. Browsing an e-newsletter, I noticed a research study call for participants in a mindfulness therapy group at York University for youth with autism spectrum disorder and their parents. Perfect timing, since my son's anxiety has stalled his plans for post-secondary education.
I am a newcomer to mindfulness—my notion was some kind of Zen-like practice that would grant us moments of peace in a busy day. During the intake, I was told that we will both be trained in techniques that might help us handle stress. This sounded promising. If we were both calmer, it just might rub off on one another.
Our group included eight parents, an encouraging young psychologist/facilitator and a graduate student. We were part of a research project called MYmind in the department of psychology.
Creaking down to cushions on the floor, I closed my eyes.
“In this moment...” a voice began.
Deceptively simple meditations started with the sound of a bell, and we were asked to simply bring our attention to this breath, or this sensation, this smell, this sound. Guided gently by our facilitator’s instructions, we attempted to observe instead of overthink, and focus only on ourselves—right here, right now.
For me, this is not as easy as it sounds. It was like trying to drink from one hole in a lawn sprinkler.
We were handed a single raisin and asked to mindfully observe each step as we hold, smell, taste, chew and swallow. It is a numbingly slow exercise during which I wondered how learning to eat this way might help me lose a few pounds. It also demonstrated how some behaviours are so routine that they are done without thought, on auto-pilot.
Am I parenting the same way I am eating? Going through the motions because I've done it for so long?
During sessions, we practised allowing thoughts to drift in and out, like clouds. We tried to listen without judgment to each other and discussed scenarios that generate parental stress. Members of our parent group, with splendidly diverse personalities, acknowledged and shared auto-piloted responses to their children teetering on the brink of adulthood. We all understood.
Our facilitator listened with gentle suggestions to observe and accept rather than react. This seemed profoundly frustrating at first, for one who has been taught to take advantage of “teachable moments” as they occur. With my son I am always listening, noticing those moments, and giving him timely cues so he can learn to “generalize appropriate social behaviours,” words that come alarmingly easily to me.
No wonder he is anxious, I thought. He has been living an ever-present social skills workshop led by his mother.
If mindfulness is learning how to deepen our attention and awareness of ourselves, it brings with it an awareness of the effect that we have on those around us. We were told that mindful observation of our children means the practice of seeing them as if for the first time. Perhaps seeing what a visiting alien might see, then reacting without judgment.
Gradually, I am trying to turn back the clock to a time when I knew nothing of ASD, DSM, SLP and other now habitual acronyms. I am re-learning how to listen, observe and not always try to “fix.” Not because I don't want to, but because it's just not always helpful for either of us.
We were also told that mindfulness means being compassionate to yourself. One of my handouts is a letter-sized page with very large type reading: Don't Should Yourself. It is hanging in plain view in my workspace.
In this moment… my son and I are both doing just fine.
Resources:
"Mindful parenting is the ongoing process of intentionally bringing moment-to-moment, non-judgemental awareness as best one can to the unfolding of one's own lived experience, including parenting. Cultivating mindfulness in parenting starts with self-awareness."
~ Jon Kabat-Zinn, Founder, Stress Reduction Clinic at the University of Massachusetts Medical School
Mymind research project at York University
Research Institute of Child Development and Education, University of Amsterdam
Thursday, April 30, 2015
Feeling judged as a parent? Read this
By Jessica Geboers
Canadian parenting expert Ann Douglas spoke with BLOOM about her new book Parenting Through the Storm—a collection of strategies for raising children with mental health, behaviour or learning challenges, and maintaining your own health and happiness in the process. It’s Ann's most personal book to date (see above with her husband and four children). Each of Ann’s children has struggled with something, including bipolar disorder, depression, anorexia, Asperger syndrome and ADHD.
BLOOM: What made you want to write this book, particularly at this point in your career?
Ann Douglas: I remember thinking at the time, when my kids were going through such a difficult time, how it seemed like a lot of mainstream parenting books just didn’t really speak to me. I used to get infuriated by magazine articles that would say something like: ‘Better behaviour from your child in 30 days.’ That kind of article would make me crazy because it felt, to me, like the ‘Thinner in 30 days thing;’ it was unrealistic and didn’t apply to everyone. It reminded me of the kind of advice that sometimes you'd get from a well-meaning friend or relative who’d say ‘Well, tell them how to behave.’ It's like ‘Well, honestly, you think we haven't tried that? They're having a really hard time. I think you're not understanding the extent [to which] we're struggling, and the fact that we've tried everything we can think of.’
I wanted to write a book that would help parents to feel a little less alone and a lot less judged. So that was sort of my goal. In terms of why I decided to write it now: back when we were struggling, I was going through such a hard time I could hardly write a grocery list. I was not in a position to be able to look at things analytically and to be able to go into the problem-solving mode, because I was feeling stressed and overwhelmed by the situation. I think I needed to have a bit of time so that I could see that my kids could come through the other side, they could make it through the storm, and that we could thrive as a family. Only then did I feel like I could sort of start to think through what was effective, what worked for us, and then do the research to find out what worked for other families, and what strategies research was identifying as helpful.
BLOOM: One of the key themes is that in order to support your child who is struggling, parents need to take care of themselves. Is this a new idea?
Ann Douglas: No, I don't think it is. But I think that it’s a message that parents can’t hear often enough. Because you’ll say, ‘yeah, yeah, yeah, I know I really should be getting sleep or exercising or whatever, and I will once my child is doing this better, or my child gets past this milestone.’ Then you keep postponing that time of self-care and you can't do that indefinitely or you become totally depleted and burned out. I say this from personal experience. One of the reasons I'm so passionate about this stuff now is because I really did sort of hit the wall: I wasn't sleeping well. I wasn't eating well. I gained about 100 pounds and I had to really work hard to lose that weight.
BLOOM: For parents who feel overwhelmed with the demands of their child, how can they start to care for their own mental and physical health?
Ann Douglas: Sometimes it’s just little wee tiny things, like if somebody offers to help in some way letting that person help as opposed to going ‘no, no, no, we're okay. Don't worry about it.’ People want to help, so accept those offers because they can only help to make your life easier. As long as it’s not a high-maintenance person that's going to come in and start making your life miserable. We’re talking about lovely friends and family who do everything from fold laundry, run errands for you, or stay at your house with your child while you go for a walk around the block if that's all you feel you can manage at first. Because it really is very, very stressful and, I think, it's the emotional toll: the fact that your brain is still working away at solving the problems and worrying about your child 24/7. [For example], if you wake up in the middle of the night it can be hard to get back to sleep because you're feeling so worried and overwhelmed.
Looking for little ways to inject some self-nurturing or some fun into your day [is also important]. Even if it's just, when you get a momentary lull, to flip through the pages of your favourite magazine, or having a cup of your favourite tea, and connecting with people who support you. Whether it’s firing off a quick text message to your best friend saying this wonderful thing happened today, or this incredibly frustrating thing happened today. Just having an outside connection that can say, ‘you know what, you're doing a great job and you just keep doing that.’
BLOOM: Why is it so hard for parents to take care of themselves?
Ann Douglas: I think a large piece of it is that you know your child so well, and you’re into such a groove or routine with your child, that you worry: if I have a child who has autism, for example, [who] doesn't respond well to changes in routines, if I go down the street to have coffee or lunch with my friend and somebody else is here they're going to do things a different way and my child is going to find that challenging. And yes, this is true, but if you look at the cost-benefit analysis, maybe having a parent who feels refreshed and can take on the day is worth a little bit of upset. Plus you want to encourage your child, over time, to work on flexibility, so that can be one way to do it.
I think to realize that it is hard; it’s not as easy as just walking out the door. There’s so much more planning and worrying and thinking involved. But I know [that] so many parents, once they take that step, they say, ‘Why didn't I do this years ago?’ Because they really feel that it has made that much of a difference in their ability to cope and not to feel flattened and depleted all the time.
BLOOM: What do you think happens if parents don't make themselves or self-care a priority?
Ann Douglas: They get really burnt out and really depleted and their physical health can suffer. Their mental health can suffer. They can't be the kind of strong advocate for their child that they want to be. They could be really grumpy and unable to focus on big-picture parenting goals, but get caught up in the emotion of the moment because they [don’t] have any self-control resources left.
BLOOM: In the writing of this book you interviewed other parents and experts at length. How did you decide what to include?
Ann Douglas: Well first of all, whenever I write a book I tend to get a lot of input from parents. So I put out a call through all my usual channels asking if people would be willing to be interviewed over a period of months about their family's experiences. I had about 50 families step forward. I interviewed them via a series of eight questionnaires that were sent out over about two to three months. It was probably about eight hours’ worth of work per family answering my questionnaires. I'm hugely grateful for the time and effort they put into that because what I walked them through [was] all the different stages: What was it like for you when you didn't know what your child was dealing with? What was it like going through diagnosis and treatment? What are your hopes and dreams for your child? What is your child's life like now? So that I could write a book that would cover those different chapters in the family's journey.
In terms of the researchers and the experts, I did a huge amount of research. I read about a thousand different journal articles, about 40 books, and an awful lot of online research to find top Canadian researchers who would have something helpful to say to families. Luckily, almost everyone I asked for an interview managed to fit it in, including very, very busy people who were flying across the country to speak at conferences. I'd get them booked eight weeks in advance for 15 minutes on a Friday morning. But I managed to get a lot of really good information and to get them to sort of boil down in practical ways what this could mean to make life better for parents who have a child who’s struggling.
BLOOM: Were you surprised about how many families were willing to share their stories?
Ann Douglas: I was surprised at the depth and how much they trusted me. They told me very intimate and personal and painful times in their lives and they trusted me to portray their stories in a way that honoured themselves and their children and their struggles as opposed to judged. They made themselves vulnerable and that takes a lot of courage.
BLOOM: What do you hope parents take away from the book?
Ann Douglas: I hope that parents emerge with the feeling that they’re not alone and that they're doing the best they can in a really difficult situation. I think it's so important to remind parents to treat themselves with the same kindness they would extend to a friend who’s struggling. So in other words, we're talking about self-compassion. Because self-compassion is life changing and if I can just spark that idea in people's minds, of being a little kinder to themselves, they'll find it so much easier to deal with the day-to-day challenges of what they're facing in their families.
BLOOM: And professionals, what do you hope that they take away?
Ann Douglas: I hope professionals who read the book get a sense of how hard it is for parents and the fact that parents really are doing the best that they can. That way, professionals may be less inclined to judge or assume they know better and recognize that the parent is the true expert when it comes to their child and their family situation. If parents and professionals can work collaboratively, sharing the same goal of helping the child, amazing change can happen.
BLOOM: There are many families mentioned in the book, including your own, who have several children with mental health, behavioural and neurodevelopmental challenges. Is this common?
Ann Douglas: It is. Often a lot of things have some kind of genetic basis and we know that there’s usually a mix between genetics and the environment. So it’s not exclusively genetic, but you know there’s going to be a whole bunch of genes popping up in different family members, so it’s not unusual at all for there to be people that share the same diagnosis or have related diagnoses. Maybe one person has problems with anxiety, and somebody else with depression, and somebody else with ADHD, and so on.
BLOOM: Which can make it even more challenging?
Ann Douglas: It can, especially if the parents also share the diagnosis. Maybe [you] have ADHD and are trying to parent kids with ADHD and at first it can feel like ‘oh wow, this isn't going to work very well’ but then realize that you've gained a lot of wisdom and insight living your life and figuring out how to manage your particular challenge so you can share some of those insights with your child. You can also be more understanding because you know that these challenges are for real, they're not something made up and it’s not just a child trying to be difficult or act up for the sake of acting up. There’s a reason for the behaviour.
BLOOM: Was there anything that you learned while working on the book that was particularly new, interesting or surprising given your experience?
Ann Douglas: The information about self-regulation was something I hadn't done a lot of reading about until I started doing the research for the book. The idea that we can both boost our positive emotion and reduce our negative emotion just by making choices in our daily life; that was mind blowing for me. Just learning how taking a couple of walks a day can help me to manage my anxiety. Also, the piece about self-compassion: that it’s so important to change from the self-critical channel in your head where you hear mean things being said to yourself about yourself, to a much more self-compassionate kind of stance where you remind yourself that you're doing the best you can in a difficult situation. Then trying to think what you can do to make life better.
BLOOM: How did you decide what language to use to describe conditions?
Ann Douglas: I want to be as inclusive as possible so that everybody can sort of see himself or herself in the book. I also believe when we say someone has a mental health disorder it sounds, to me, so negative and so judgmental. I picked up on the language about calling things ‘a challenge’ from attending a mental health conference last year that was hosted by the Institute of Families for Child and Youth Mental Health. They asked the young people themselves ‘What language do you prefer when people are talking about your mental health problems/difficulties/challenge?’ And they said they would very much prefer the idea of using the word ‘challenge’ because that left the door open to possibility and hope, because if it's a challenge you can just keep working at it. Whereas if it’s a disorder, it sounds a lot more definitive and that there's not quite as much room to grow.
BLOOM: You repeat full names and diagnosis quite often. Is the book meant to be read from start to finish? Or can you kind of skip around?
Ann Douglas: You can dive in to whatever you need most today. If your child is having a hard time at school you might dive into the advocacy section and if you’re preparing for that first meeting to get a diagnosis, you might start there in the book. If you just want to know what it’s like for other families, you might read the stuff on how it is for other people and their families. That’s why it has a really good table of contents and comprehensive index—so that whatever your issue is today when you kind of feel like you're hitting the wall, then flip open the book and look for the appropriate section. You might be inspired to read other sections around it, but at least if you have a burning question or issue today, then you know where to go.
BLOOM: What kind of feedback have you had? What are you hearing from parents and professional groups?
Ann Douglas: They’re really grateful that there is a book like this now so that they don't feel quite so alone. They are just in awe of the braveness of the families who decided to share their stories in an effort to try and help other parents. I share that feeling of appreciation because if other families hadn’t been willing to share their stories there wouldn’t have been a book.
BLOOM: Was it challenging to write candidly about your own experiences?
Ann Douglas: I had to think hard about what I was prepared to share and what I wasn’t prepared to share, and I also needed to check things out with the kids because it’s not just my life, it’s their life too. So I made a lot of really conscious and deliberate choices about what I was going to write about. A couple of years ago, I sent out a tweet on Bell Let's Talk day saying that I lived with bipolar disorder and I thought it’s really important for people to know people out there who are dealing with a particular challenge or disability or whatever. Because if we don't have some sort of role models out there then nobody will ever understand that it’s possible to have a diagnosis and an amazing life. I think that I feel a real responsibility as somebody who, yes has bipolar disorder, but also, yes, has a pretty great life; that I should say I’m not going to be afraid to tell people I live with this.
BLOOM: Was it difficult to choose what you were going to include?
Ann Douglas: I think I just wanted to be as honest as I could and talk about different experiences that my kids had had and that we’d had because, again, not wanting other parents to feel like they were doing it wrong if their child was having a hard time at school or if they were having a hard time navigating the children’s services or mental health care systems. The systems are complicated and schools don’t always have the resources they need to be able to respond to the needs of children. I think that if we all talk about these challenges then that’s the first step to getting these various systems funded enough that every child gets their needs met sooner rather than later.
BLOOM: What made you want to write this book, particularly at this point in your career?
Ann Douglas: I remember thinking at the time, when my kids were going through such a difficult time, how it seemed like a lot of mainstream parenting books just didn’t really speak to me. I used to get infuriated by magazine articles that would say something like: ‘Better behaviour from your child in 30 days.’ That kind of article would make me crazy because it felt, to me, like the ‘Thinner in 30 days thing;’ it was unrealistic and didn’t apply to everyone. It reminded me of the kind of advice that sometimes you'd get from a well-meaning friend or relative who’d say ‘Well, tell them how to behave.’ It's like ‘Well, honestly, you think we haven't tried that? They're having a really hard time. I think you're not understanding the extent [to which] we're struggling, and the fact that we've tried everything we can think of.’
I wanted to write a book that would help parents to feel a little less alone and a lot less judged. So that was sort of my goal. In terms of why I decided to write it now: back when we were struggling, I was going through such a hard time I could hardly write a grocery list. I was not in a position to be able to look at things analytically and to be able to go into the problem-solving mode, because I was feeling stressed and overwhelmed by the situation. I think I needed to have a bit of time so that I could see that my kids could come through the other side, they could make it through the storm, and that we could thrive as a family. Only then did I feel like I could sort of start to think through what was effective, what worked for us, and then do the research to find out what worked for other families, and what strategies research was identifying as helpful.
BLOOM: One of the key themes is that in order to support your child who is struggling, parents need to take care of themselves. Is this a new idea?
Ann Douglas: No, I don't think it is. But I think that it’s a message that parents can’t hear often enough. Because you’ll say, ‘yeah, yeah, yeah, I know I really should be getting sleep or exercising or whatever, and I will once my child is doing this better, or my child gets past this milestone.’ Then you keep postponing that time of self-care and you can't do that indefinitely or you become totally depleted and burned out. I say this from personal experience. One of the reasons I'm so passionate about this stuff now is because I really did sort of hit the wall: I wasn't sleeping well. I wasn't eating well. I gained about 100 pounds and I had to really work hard to lose that weight.
BLOOM: For parents who feel overwhelmed with the demands of their child, how can they start to care for their own mental and physical health?
Ann Douglas: Sometimes it’s just little wee tiny things, like if somebody offers to help in some way letting that person help as opposed to going ‘no, no, no, we're okay. Don't worry about it.’ People want to help, so accept those offers because they can only help to make your life easier. As long as it’s not a high-maintenance person that's going to come in and start making your life miserable. We’re talking about lovely friends and family who do everything from fold laundry, run errands for you, or stay at your house with your child while you go for a walk around the block if that's all you feel you can manage at first. Because it really is very, very stressful and, I think, it's the emotional toll: the fact that your brain is still working away at solving the problems and worrying about your child 24/7. [For example], if you wake up in the middle of the night it can be hard to get back to sleep because you're feeling so worried and overwhelmed.
Looking for little ways to inject some self-nurturing or some fun into your day [is also important]. Even if it's just, when you get a momentary lull, to flip through the pages of your favourite magazine, or having a cup of your favourite tea, and connecting with people who support you. Whether it’s firing off a quick text message to your best friend saying this wonderful thing happened today, or this incredibly frustrating thing happened today. Just having an outside connection that can say, ‘you know what, you're doing a great job and you just keep doing that.’
BLOOM: Why is it so hard for parents to take care of themselves?
Ann Douglas: I think a large piece of it is that you know your child so well, and you’re into such a groove or routine with your child, that you worry: if I have a child who has autism, for example, [who] doesn't respond well to changes in routines, if I go down the street to have coffee or lunch with my friend and somebody else is here they're going to do things a different way and my child is going to find that challenging. And yes, this is true, but if you look at the cost-benefit analysis, maybe having a parent who feels refreshed and can take on the day is worth a little bit of upset. Plus you want to encourage your child, over time, to work on flexibility, so that can be one way to do it.
I think to realize that it is hard; it’s not as easy as just walking out the door. There’s so much more planning and worrying and thinking involved. But I know [that] so many parents, once they take that step, they say, ‘Why didn't I do this years ago?’ Because they really feel that it has made that much of a difference in their ability to cope and not to feel flattened and depleted all the time.
BLOOM: What do you think happens if parents don't make themselves or self-care a priority?
Ann Douglas: They get really burnt out and really depleted and their physical health can suffer. Their mental health can suffer. They can't be the kind of strong advocate for their child that they want to be. They could be really grumpy and unable to focus on big-picture parenting goals, but get caught up in the emotion of the moment because they [don’t] have any self-control resources left.
BLOOM: In the writing of this book you interviewed other parents and experts at length. How did you decide what to include?
Ann Douglas: Well first of all, whenever I write a book I tend to get a lot of input from parents. So I put out a call through all my usual channels asking if people would be willing to be interviewed over a period of months about their family's experiences. I had about 50 families step forward. I interviewed them via a series of eight questionnaires that were sent out over about two to three months. It was probably about eight hours’ worth of work per family answering my questionnaires. I'm hugely grateful for the time and effort they put into that because what I walked them through [was] all the different stages: What was it like for you when you didn't know what your child was dealing with? What was it like going through diagnosis and treatment? What are your hopes and dreams for your child? What is your child's life like now? So that I could write a book that would cover those different chapters in the family's journey.
In terms of the researchers and the experts, I did a huge amount of research. I read about a thousand different journal articles, about 40 books, and an awful lot of online research to find top Canadian researchers who would have something helpful to say to families. Luckily, almost everyone I asked for an interview managed to fit it in, including very, very busy people who were flying across the country to speak at conferences. I'd get them booked eight weeks in advance for 15 minutes on a Friday morning. But I managed to get a lot of really good information and to get them to sort of boil down in practical ways what this could mean to make life better for parents who have a child who’s struggling.
BLOOM: Were you surprised about how many families were willing to share their stories?
Ann Douglas: I was surprised at the depth and how much they trusted me. They told me very intimate and personal and painful times in their lives and they trusted me to portray their stories in a way that honoured themselves and their children and their struggles as opposed to judged. They made themselves vulnerable and that takes a lot of courage.
BLOOM: What do you hope parents take away from the book?
Ann Douglas: I hope that parents emerge with the feeling that they’re not alone and that they're doing the best they can in a really difficult situation. I think it's so important to remind parents to treat themselves with the same kindness they would extend to a friend who’s struggling. So in other words, we're talking about self-compassion. Because self-compassion is life changing and if I can just spark that idea in people's minds, of being a little kinder to themselves, they'll find it so much easier to deal with the day-to-day challenges of what they're facing in their families.
BLOOM: And professionals, what do you hope that they take away?
Ann Douglas: I hope professionals who read the book get a sense of how hard it is for parents and the fact that parents really are doing the best that they can. That way, professionals may be less inclined to judge or assume they know better and recognize that the parent is the true expert when it comes to their child and their family situation. If parents and professionals can work collaboratively, sharing the same goal of helping the child, amazing change can happen.
BLOOM: There are many families mentioned in the book, including your own, who have several children with mental health, behavioural and neurodevelopmental challenges. Is this common?
Ann Douglas: It is. Often a lot of things have some kind of genetic basis and we know that there’s usually a mix between genetics and the environment. So it’s not exclusively genetic, but you know there’s going to be a whole bunch of genes popping up in different family members, so it’s not unusual at all for there to be people that share the same diagnosis or have related diagnoses. Maybe one person has problems with anxiety, and somebody else with depression, and somebody else with ADHD, and so on.
BLOOM: Which can make it even more challenging?
Ann Douglas: It can, especially if the parents also share the diagnosis. Maybe [you] have ADHD and are trying to parent kids with ADHD and at first it can feel like ‘oh wow, this isn't going to work very well’ but then realize that you've gained a lot of wisdom and insight living your life and figuring out how to manage your particular challenge so you can share some of those insights with your child. You can also be more understanding because you know that these challenges are for real, they're not something made up and it’s not just a child trying to be difficult or act up for the sake of acting up. There’s a reason for the behaviour.
BLOOM: Was there anything that you learned while working on the book that was particularly new, interesting or surprising given your experience?
Ann Douglas: The information about self-regulation was something I hadn't done a lot of reading about until I started doing the research for the book. The idea that we can both boost our positive emotion and reduce our negative emotion just by making choices in our daily life; that was mind blowing for me. Just learning how taking a couple of walks a day can help me to manage my anxiety. Also, the piece about self-compassion: that it’s so important to change from the self-critical channel in your head where you hear mean things being said to yourself about yourself, to a much more self-compassionate kind of stance where you remind yourself that you're doing the best you can in a difficult situation. Then trying to think what you can do to make life better.
BLOOM: How did you decide what language to use to describe conditions?
Ann Douglas: I want to be as inclusive as possible so that everybody can sort of see himself or herself in the book. I also believe when we say someone has a mental health disorder it sounds, to me, so negative and so judgmental. I picked up on the language about calling things ‘a challenge’ from attending a mental health conference last year that was hosted by the Institute of Families for Child and Youth Mental Health. They asked the young people themselves ‘What language do you prefer when people are talking about your mental health problems/difficulties/challenge?’ And they said they would very much prefer the idea of using the word ‘challenge’ because that left the door open to possibility and hope, because if it's a challenge you can just keep working at it. Whereas if it’s a disorder, it sounds a lot more definitive and that there's not quite as much room to grow.
BLOOM: You repeat full names and diagnosis quite often. Is the book meant to be read from start to finish? Or can you kind of skip around?
Ann Douglas: You can dive in to whatever you need most today. If your child is having a hard time at school you might dive into the advocacy section and if you’re preparing for that first meeting to get a diagnosis, you might start there in the book. If you just want to know what it’s like for other families, you might read the stuff on how it is for other people and their families. That’s why it has a really good table of contents and comprehensive index—so that whatever your issue is today when you kind of feel like you're hitting the wall, then flip open the book and look for the appropriate section. You might be inspired to read other sections around it, but at least if you have a burning question or issue today, then you know where to go.
BLOOM: What kind of feedback have you had? What are you hearing from parents and professional groups?
Ann Douglas: They’re really grateful that there is a book like this now so that they don't feel quite so alone. They are just in awe of the braveness of the families who decided to share their stories in an effort to try and help other parents. I share that feeling of appreciation because if other families hadn’t been willing to share their stories there wouldn’t have been a book.
BLOOM: Was it challenging to write candidly about your own experiences?
Ann Douglas: I had to think hard about what I was prepared to share and what I wasn’t prepared to share, and I also needed to check things out with the kids because it’s not just my life, it’s their life too. So I made a lot of really conscious and deliberate choices about what I was going to write about. A couple of years ago, I sent out a tweet on Bell Let's Talk day saying that I lived with bipolar disorder and I thought it’s really important for people to know people out there who are dealing with a particular challenge or disability or whatever. Because if we don't have some sort of role models out there then nobody will ever understand that it’s possible to have a diagnosis and an amazing life. I think that I feel a real responsibility as somebody who, yes has bipolar disorder, but also, yes, has a pretty great life; that I should say I’m not going to be afraid to tell people I live with this.
BLOOM: Was it difficult to choose what you were going to include?
Ann Douglas: I think I just wanted to be as honest as I could and talk about different experiences that my kids had had and that we’d had because, again, not wanting other parents to feel like they were doing it wrong if their child was having a hard time at school or if they were having a hard time navigating the children’s services or mental health care systems. The systems are complicated and schools don’t always have the resources they need to be able to respond to the needs of children. I think that if we all talk about these challenges then that’s the first step to getting these various systems funded enough that every child gets their needs met sooner rather than later.
Tuesday, March 24, 2015
A social media blitz isn't friendship
Yesterday my hubby sent me an e-mail with a link to this story about a 13-year-old Peterborough, Ont. boy with Asperger's. He invited 15 students to his birthday party and not one RSVP'd.
"I read this and started crying," he wrote, thinking about our son. We had a similar situation a few years ago when our son invited two "friends" from school to a celebration that involved going to see The Hunger Games and they didn't show. I remember sitting at our dining room table cutting cake with my other kids when my son asked "where" his friends were and "why" they weren't there. "Something must have come up," I said. We went as a family to the movie.
People who don't have kids with significant disabilities don't have a clue what this is like. It's completely outside their realm of experience. I don't think I would have believed the degree of isolation that can happen, especially in high school and early adulthood, to youth with more significant disabilities, or those that make social relationships challenging.
In 2012, Dr. Anne Snowdon's study of 166 families in three Canadian cities found that more than half of children with physical and developmental disabilities have no friends or only one friend. Only 1 per cent spend an hour a day with a friend. Is that possible? Growing up I spent hours with friends everyday after school.
Last year Sarah Keenan, life skills coach at Holland Bloorview, spoke about how research shows friendship is associated with life satisfaction and good mental health in the general population. On the other hand, loneliness negatively impacts the immune system and heart health.
Children with disabilities tend to have fewer friends and smaller social networks than their peers, Sarah said, after reviewing 56 studies. She referenced an American study of 11,000 teens that found that “over 50 per cent of students with autism had no contact with friends outside school and were never invited to spend time with friends.”
Studies find that typical youth are more open to having a friend who has a physical disability than one with an intellectual disability, she said. However, interactions with youth with disabilities in general are often superficial on the part of typical youth.
On the weekend people were touched by the outpouring of social media support for the Peterborough student. After his mother posted about his friends giving him the cold shoulder, tweets poured in from sports teams, actors, singers and politicians, all sending him birthday greetings. And strangers and media came to his party at a bowling alley that night.
That's great, and I'm sure it was a huge boost to this boy and his family. But how will this translate into changes in the boy's daily life? What about the 15 students he wanted to come to his party, who didn't even respond? How will their ideas or behaviour change? This was a feel-good one-off—one tweet sent, one event attended. Inclusion for youth with disabilities is so much more complicated than that.
This morning I heard from a parent in Vancouver who sent me a link to a video about her son, with autism, and Club G—an elementary school's efforts to ensure he was included. Make sure you watch it. I was crying tears of joy by the end. This is the thinking behind Club G.
But then I thought about it and my pessimism returned. This is elementary school. Our own experience has been that authentic friendship is possible during those early years, when kids are receptive and a school makes disability awareness and inclusion a priority.
It's in the high school years that things break down—when the focus becomes much more academic, schools are less invested in character development, education for students with disabilities often becomes segregated, and teens themselves cringe to be seen as different.
According to a U.S. National Institutes Health Funded Study led by Holland Bloorview researcher Gillian King, the teen years are particularly difficult for youth with disabilities. While peers become involved in a growing array of activities that widens their social network, teens with disabilities tend to stick with the same activities, often with family members.
This is a deep, difficult cultural problem, not one that can be solved on social media.
Thursday, January 24, 2013
'Just like me—only different'
Michelle Smith, 20, is the focus of the documentary Three Days to See, which was inspired by a Helen Keller essay about what Keller would like to see if given sight for three days. “It uses blindness as a metaphor for how we all lose sight of what’s important,” says Jeff Migliozzi, Michelle's teacher at the Perkins School for the Blind. Michelle was born blind, has Asperger’s syndrome and left her home in rural Maine to be a student at the Perkins school in Boston at age 14. “The movie is about passion,” Michelle says. “It’s about liking what you like, trusting your own voice and not letting your disabilities dictate what you should be passionate about.” Three Days to See is trying to raise funds to ensure its footage moves into post-production at Kickstarter. I spoke with Michelle.
BLOOM: What has been most challenging for you growing up?
Michelle Smith: Not only am I legally blind but I also have Asperger’s syndrome. And while it’s great to be passionate about things, what’s not great is my brain is wired differently, so I don’t connect with others on the same level most people do. I don’t feel empathy and I don’t feel a lot of the natural emotions other people feel, so it does get difficult. It is a disability. I can’t ignore it and I’ve had a problem where people don’t know about it and when they find out they don’t know what to think of me. It caused me to be fired from a job. When I was at the Perkins School for the Blind everyone there understood Asperger’s, but then I graduated last year and I went into the working world and my vocational counsellor didn’t tell my boss I had Asperger’s. In some ways my blindness is an easier topic to tackle when it comes to working. I can’t see the labels, so I get a magnifier. But what do you do when you have Asperger’s? There isn’t a little gadget you can get to fix this.”
BLOOM: You mention in the film’s trailer that you have good ideas and opinions, but people don’t listen to you because of your disability. How do people react to you?
Michelle Smith: It depends on how long someone has known me. If they see me with my cane at the grocery store, they’ll think “She’s so brave” and that consumes all of their opinion of me. In their mind I’m no longer a person, I’m sort of this personification of blindness, like Helen Keller was. I’m no longer this chick, I am this brave blind woman—look at her go. And that’s not how I want to be perceived. I want to be seen as a human being, as a person. At first it felt good when people said I was brave for going to the store to get milk. But then I realized brave is another word for saying 'we didn’t think you could do this.'
Once people get to know me, they realize not only is she blind, but she has this other problem too, and they don’t know how to deal with me. It’s hard. They feel they have to walk on eggshells around me. I’d rather they ask me questions than pretend the Asperger’s doesn’t exist or treat me like the elephant in the room.
I have one really, really close friend who is also blind. We’re in a similar position where we’re both stuck in our house most of the time. I graduated last June and live in Maine with my mother. It’s snowing and I find it hard to manoeuvre with snow banks so I stay in my room a lot of the times. We’re both bored so we call each other up on Skype.
BLOOM: Tell me about Three Days to See.
Michelle Smith: The themes revolve around Helen Keller’s essay Three Days to See. It’s about being passionate about what you like and not letting your disabilities dictate what you’re passionate about. Even though Helen Keller can’t see, she understands art. And even though she can’t see or hear a play, she understands it and is passionate about it. It’s the idea that anyone can appreciate art and theatre, and not having that level of exclusivity that is so common in our society today. In the movie, I go through many stages of interests. When it starts, I was interested in anime. Then halfway through I went through a big phase when I was playing minecraft. And now that the movie is almost done and being created, my obsession is Daria on MTV. It’s an older show from the 90s about a teenager who wore glasses and was disenfranchised from youth culture and sarcastic and funny and awesome. It was a cartoon and the opposite of most stuff on TV.
BLOOM: What kind of impact do you hope Three Days to See will have?
Michelle Smith: It’s about looking at people as people, and not seeing people as their disability or as a personification of their disability, or as a personification of a stereotype. In the film I say ‘This person is just like me—only different’ and the point is that everyone’s like you, in terms of their hopes, dreams, fears and anxieties, even if they don’t show it. The movie isn’t about being sighted or blind per se, it’s about treating people like people and trusting your own voice and thinking twice about having preconceived notions about someone. If I affect one person’s perception of the world and how they should view other people I’ll view this as all worthwhile.
One of the reasons I like Daria is there’s an episode where she decides ‘I won’t wear glasses anymore’ and she wears contacts but the next day she can’t put them in because her eyes hurt so much. So she doesn’t wear either and she’s stumbling around, because she’s vain, but eventually she realizes it doesn’t matter. She’s talking to her best friend Jane at the pizza parlour and she says: ‘When I take my glasses off and look in the mirror I can’t see a thing. And when I put them back on I can see things that other people can’t see. I can see better than other people, so who cares what people say about me and my glasses.’ And then her friend Jane says: ‘You aren’t talking about eyesight anymore, are you.’ And Daria says ‘No, I’m not.’ I’m like that. I can see things other people can’t.
BLOOM: I would imagine that being blind is an advantage when getting to know someone in the sense that you don’t judge people based on appearance.
Michelle Smith: I’m thankful that I don’t judge people on their looks. I think if I’d been born with full vision and no Asperger’s syndrome I would have grown up to be kind of shallow. When I talk to people I don’t care what they look like, what clothes they wear, what race they are. I just want to talk to them because they’re another person. I can learn something new about their experience and there’s so much for me to learn. I don’t understand people when they’re passive aggressive or don’t say what they mean. I can’t read between the lines. These aren’t always things I want to learn about the human experience, but they’re things I have to learn to survive.
BLOOM: What are your dreams for the future?
Michelle Smith: I write fan fiction and I think it would be cool to be a writer of original fiction. But I’m practical, so I think I’m going to go to college and pursue publishing and then I can resume my writing on the side.
BLOOM: What is fan fiction?
Michelle Smith: Let’s say you love a book series and you’ve read all the books and seen the movies and you want more. You go to a fan fiction website and there are thousands of stories—some as long as novels—about the characters and situations but not written by the author, written by fans. I write and read Daria fan fiction a lot.
Thursday, October 4, 2012
The Asperger's/Autism debate
Metro Morning: Changing Definition
We interviewed Jessica earlier on the topic here: New autism definition makes sense, clinician-scientist says.
Wednesday, February 1, 2012
New autism definition makes sense, a clinician-scientist says
An expert panel of the American Psychiatric Association is proposing a change as it prepares the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM) – the first major revision in 17 years.
I interviewed Dr. Jessica Brian, a clinician-investigator in the Autism Research Centre at Holland Bloorview, to learn more.
BLOOM: What are the proposed changes?
Dr. Jessica Brian: The proposed changes are to have a single term – autism spectrum disorder (ASD) – that includes children who would previously have fallen into one of three categories: autism, pervasive developmental disorder – not otherwise specified (PDD-NOS), or Asperger syndrome. They’re also talking about collapsing the idea of social deficits and communication deficits, since there are so many overlaps between the two. There will not be a single category for social deficits and a single category for communication deficits but one category called social communication. In that category you have to meet criteria on all of the items but the items are extremely broad and inclusive.
BLOOM: Are there advantages to the old system of three definitions?
Dr. Jessica Brian: Not really. Currently there isn’t evidence to support this distinction between three sub-categories. Most of the research out there doesn’t find differences in terms of genetic susceptibility – so the three sub-categories seem to have the same genetic basis. That’s why you’ll find a family where one child has Asperger’s and one child has autism. And prediction of outcome isn’t supported by the three distinctions. When we follow kids in research we find they typically stay within the spectrum, but they move up or down in terms of whether they meet the full criteria for autism or the fewer criteria for PDD-NOS. We don’t think of them as separate disorders, but as different intensities across a continuum. In my clinical work, the distinctions between the sub-categories can also be confusing for families.
BLOOM: I’m surprised, because I thought diagnosing a child with autism was more precise?
Dr. Jessica Brian: If you have a room full of autism experts seeing one child, they will usually agree that the child fits somewhere on the autism spectrum but there will not be good agreement about which sub-category. It is challenging to identify exactly where a child sits on the autism spectrum and that’s what’s prompted these recommendations.
BLOOM: Are there any other advantages to having one definition?
Dr. Jessica Brian: We think one definition could expedite the assessment process, because we won’t fuss about whether the child has PDD or autism, we just know they have ASD and we can move them into services more quickly.
BLOOM: I know there’s been concern by parents that higher-functioning children will no longer qualify for services.
Dr. Jessica Brian: In Canada it’s extremely unlikely that kids with existing diagnoses would ever be re-diagnosed unless parents specifically want it and seek private assessments. There aren’t the resources in the public system to re-diagnose these kids. So the fear of losing services is unwarranted, at least in Canada. I know people in the U.S. are worried about losing insured services but I have to ask the same question: Who is going to reassess all of these kids?
BLOOM: What about findings that are reported to show that only 45 percent of the highest-functioning kids would qualify for the new diagnosis?
Dr. Jessica Brian: That’s just one piece of preliminary evidence that hasn’t been published yet. A study published in January found that 12 percent of higher-functioning individuals might be missed by the new criteria, but if only one criterion was removed, almost all kids would be included. It’s important to note that we have to find ways to provide necessary services to kids who have needs even if they don’t meet full criteria for a diagnosis. Some kids will still need communication or social or behavioural supports even if they don’t get a diagnosis of ASD. We need to keep this in mind and keep pushing for needs-based access to services.
BLOOM: Is the broader definition positive in that children aren’t as pigeon-holed when they’re first diagnosed?
Dr. Jessica Brian: Yes, we can say that they will most likely stay on the autism spectrum, but developmental changes are very possible.
BLOOM: I guess there will be some resistance to the broader definition?
Dr. Jessica Brian: According to the proposed changes, the term Asperger won’t be used in the DSM. But I suspect there will be a strong group of people with Asperger’s who self-identify that way and I would expect that that term will remain alive among individuals who have those characteristics. There is a culture of Asperger’s that we won’t lose anytime soon. It’s a badge of honour, a characteristic many people are proud of.
BLOOM: It doesn’t sound like the change in definition will have a significant impact on our work here?
Dr. Jessica Brian: We’ve been using the term ASD for many years even though it’s not in the DSM4. And the reason we’ve been using it in research and clinical settings is because we’re aware that those sub-distinctions aren’t always that helpful or meaningful.
Wednesday, August 31, 2011
Boy with Asperger's, 9, handcuffed by police at daycare
I heard an interview on CBC at lunch today about this case. A Toronto child with Asperger's, ADHD and Oppositional Defiant Disorder had a melt-down at a daycare, and was placed in a separate room where he barricaded himself and began throwing furniture and paint around. The boy later said he was being bullied and called names in the lunchroom. The police were called, broke open the door and asked the boy to lie down, which he did. Even though he was now lying on the ground, the boy was handcuffed.
I just saw the Canadian Press news story in the Globe on the subject. The story, which seemed to be derived from a CityTV report, is seriously lacking in details, some of which come to light in this Globe editorial and this story in the Windsor Star: Toronto Police handcuffed mentally-challenged boy after 'uncontrollable' behaviour.
The news story in the Globe produced over 1,000 comments, and I was struck by the utter lack of knowledge about Asperger's and Oppositional Defiant Disorder (only the former was mentioned in this story). Asperger's is a neurological condition and ODD is a psychiatric disorder.
This was not a case of a 'bad' kid gone 'berserk,' or a discipline issue, or of parents who can't control their kids, as many commenters suggested.
"I'm wondering why a child with Aspergers and other "disorders" is even in a daycare in the first place?" wrote one. "Maybe the parents should have someone look after him in their home. Oh, wait, that would cost more money."
It's lucky he wasn't tasered, pepper-sprayed, slammed to the wall, beaten up or piled on top of by police, said others. "Being a child with 'special needs' doesn't release him from any responsibility," wrote one. "Don't allow special-needs children into classrooms," said another.
I do not know a lot about Asperger's or ODD.
I do know lovely children who have these disorders and the struggle their parents face to try to get them the help and supports they need and to convince people that their children do indeed have disabilities. I know how challenging it is for parents to educate daycare workers or school staff on the techniques that help prevent and diffuse their children's behaviour. There are often insufficient staff, staff who aren't properly trained, or staff who don't follow through with known calming techniques because they don't believe the child has a disability in the first place.
Then I read this Windsor Star report of the event and my heart just about broke when I got to the last paragraph.
Toronto police Const. Victor Kwong said the boy, who in addition to Asperger syndrome, is also diagnosed with ADHD and Oppositional Defiant Disorder, became angry in the daycare's lunchroom when other children were bullying him and calling him names.
"What teachers say is that he became uncontrollable," said Kwong.
A daycare worker, fearing for the boy's safety and that of the other children, called police after the boy barricaded himself in an empty classroom and started throwing around chairs, tables and paint.
Kwong said when officers arrived on the scene, they asked the boy to lay down on the floor on his stomach, and put him in handcuffs.
He said the boy was only in handcuffs for about five minutes, after which he calmed down and was chatting with police about his hobbies. "When he left, he hugged the officers and the nurse," said Kwong who stood by the officers' decision to cuff the boy. "This worked. He listened," said Kwong.
I just saw the Canadian Press news story in the Globe on the subject. The story, which seemed to be derived from a CityTV report, is seriously lacking in details, some of which come to light in this Globe editorial and this story in the Windsor Star: Toronto Police handcuffed mentally-challenged boy after 'uncontrollable' behaviour.
The news story in the Globe produced over 1,000 comments, and I was struck by the utter lack of knowledge about Asperger's and Oppositional Defiant Disorder (only the former was mentioned in this story). Asperger's is a neurological condition and ODD is a psychiatric disorder.
This was not a case of a 'bad' kid gone 'berserk,' or a discipline issue, or of parents who can't control their kids, as many commenters suggested.
"I'm wondering why a child with Aspergers and other "disorders" is even in a daycare in the first place?" wrote one. "Maybe the parents should have someone look after him in their home. Oh, wait, that would cost more money."
It's lucky he wasn't tasered, pepper-sprayed, slammed to the wall, beaten up or piled on top of by police, said others. "Being a child with 'special needs' doesn't release him from any responsibility," wrote one. "Don't allow special-needs children into classrooms," said another.
I do not know a lot about Asperger's or ODD.
I do know lovely children who have these disorders and the struggle their parents face to try to get them the help and supports they need and to convince people that their children do indeed have disabilities. I know how challenging it is for parents to educate daycare workers or school staff on the techniques that help prevent and diffuse their children's behaviour. There are often insufficient staff, staff who aren't properly trained, or staff who don't follow through with known calming techniques because they don't believe the child has a disability in the first place.
Then I read this Windsor Star report of the event and my heart just about broke when I got to the last paragraph.
Toronto police Const. Victor Kwong said the boy, who in addition to Asperger syndrome, is also diagnosed with ADHD and Oppositional Defiant Disorder, became angry in the daycare's lunchroom when other children were bullying him and calling him names.
"What teachers say is that he became uncontrollable," said Kwong.
A daycare worker, fearing for the boy's safety and that of the other children, called police after the boy barricaded himself in an empty classroom and started throwing around chairs, tables and paint.
Kwong said when officers arrived on the scene, they asked the boy to lay down on the floor on his stomach, and put him in handcuffs.
He said the boy was only in handcuffs for about five minutes, after which he calmed down and was chatting with police about his hobbies. "When he left, he hugged the officers and the nurse," said Kwong who stood by the officers' decision to cuff the boy. "This worked. He listened," said Kwong.
Thursday, June 24, 2010
News stories of interest
Last night Ben and I went swimming in the heated pool at Bloorview -- the first time in months since before his surgery. He has a knee contracture because his leg was held in a bent position for so long in the cast -- which means that he can't straighten his leg, and until he can straighten his leg, he can't walk. However, the buoyancy and warmth of the water was incredibly relaxing. So for 1.5 hours we could float around and forget all about stretching out his tight, painful leg and the fact that he can't stand on it the way he used to.
Here are some recent news stories of note. Cheers, Louise
A struggle to educate the severely disabled
A feature in the New York Times spurred numerous comments from readers who felt education dollars were wasted on students with multiple disabilities. "We're polishing stones and dulling diamonds," one reader wrote.
Bill passed in Albany to make insurers pay for autism care
State lawmakers passed legislation this week that would require insurers to cover autism-related screenings, diagnoses and treatments.
Swedish theatre includes actors with intellectual disabilities
A groundbreaking theatre in Malmö, Sweden, makes people with intellectual disabilities equal partners in the creative process.
My disabled son's first time at camp
The decision was made. Part of me was terrified.
NIH awards $2.5 million to study osteoporosis in youth with Spina Bifida
"We don't know whether or not adolescents with spina bifida have differences in bone development resulting from their disease or if they're developing less bone mass because they're spending less time doing weight-bearing activities."
Gizmo enables woman with CP to run her own flower shop
An engineer designs a device that allows a woman to strip leaves and cut stems with one hand.
Pilot school for Asperger's hopes to open in fall
A mother hopes to open the first private school for children with Asperger's in Canada.
Here are some recent news stories of note. Cheers, Louise
A struggle to educate the severely disabled
A feature in the New York Times spurred numerous comments from readers who felt education dollars were wasted on students with multiple disabilities. "We're polishing stones and dulling diamonds," one reader wrote.
Bill passed in Albany to make insurers pay for autism care
State lawmakers passed legislation this week that would require insurers to cover autism-related screenings, diagnoses and treatments.
Swedish theatre includes actors with intellectual disabilities
A groundbreaking theatre in Malmö, Sweden, makes people with intellectual disabilities equal partners in the creative process.
My disabled son's first time at camp
The decision was made. Part of me was terrified.
NIH awards $2.5 million to study osteoporosis in youth with Spina Bifida
"We don't know whether or not adolescents with spina bifida have differences in bone development resulting from their disease or if they're developing less bone mass because they're spending less time doing weight-bearing activities."
Gizmo enables woman with CP to run her own flower shop
An engineer designs a device that allows a woman to strip leaves and cut stems with one hand.
Pilot school for Asperger's hopes to open in fall
A mother hopes to open the first private school for children with Asperger's in Canada.
Wednesday, April 7, 2010
Seeing ourselves in media
Happy Wednesday!
Here are some interesting items about film, TV and news related to disability or difference.
"When Carl Met George" is a new storyline in the PBS television show Arthur that features Carl, above left, a new friend of George's who has Asperger syndrome. The first episode aired April 5. Did anyone see it? Tell us what you thought!
Tying Your Own Shoes is a beautiful, animated documentary about the lives of four adult artists who have Down syndrome. This Canadian film "combines self-portraits with first-person narratives to challenge widely-held stereotypes." Read more or purchase it at the link. My wonderful friend Madeleine shared it with me.
Six men and women speak about living with an autism-spectrum disorder in this New York Times Patient Voices series.
A new study of people with facial paralysis related to Moebius syndrome finds that people with the disorder had no trouble at all recognizing others’ expressions. Lead researcher Kathleen Bogart, who has the syndrome, talks about the study in: Seeking Emotional Clues without Facial Cues.
Tying Your Own Shoes is a beautiful, animated documentary about the lives of four adult artists who have Down syndrome. This Canadian film "combines self-portraits with first-person narratives to challenge widely-held stereotypes." Read more or purchase it at the link. My wonderful friend Madeleine shared it with me.
Six men and women speak about living with an autism-spectrum disorder in this New York Times Patient Voices series.
A new study of people with facial paralysis related to Moebius syndrome finds that people with the disorder had no trouble at all recognizing others’ expressions. Lead researcher Kathleen Bogart, who has the syndrome, talks about the study in: Seeking Emotional Clues without Facial Cues.
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