Looking for resources on autism
October 17, 2013 8:44 PM Subscribe
My 5 year old nephew was recently officially diagnosed with autism, as a two on the three-level scale. I know next to nothing about autism and am seeking resources that will help me become more educated about the disorder. I would love recommendations on books, blogs, magazine articles, documentaries, etc.
I am particularly interested in learning about these things:
-- What is life like for a person with autism? (I do already know I want to read The Reason I Jump)
-- What are the challenges parents face?
-- What is treatment like?
-- What is it like being the sibling of an autistic child?
-- Prevalence - are autism rates going up? That's what I have heard, but is it true?
-- Why does it seem to disproportionately affect boys?
-- Causes? Especially if the prevalence is increasing, why is it increasing? Why do some people believe vaccines are to blame?
-- How has autism been treated/viewed/approached historically?
I do know there are a ton of Metafilter posts tagged with autism and will be going through those as well.
I am particularly interested in learning about these things:
-- What is life like for a person with autism? (I do already know I want to read The Reason I Jump)
-- What are the challenges parents face?
-- What is treatment like?
-- What is it like being the sibling of an autistic child?
-- Prevalence - are autism rates going up? That's what I have heard, but is it true?
-- Why does it seem to disproportionately affect boys?
-- Causes? Especially if the prevalence is increasing, why is it increasing? Why do some people believe vaccines are to blame?
-- How has autism been treated/viewed/approached historically?
I do know there are a ton of Metafilter posts tagged with autism and will be going through those as well.
The film Temple Grandin was based on the biography of well, Temple Grandin.
With the Light: Raising an Autistic Child is a Japanese manga, part of 7volume fictional works, but it was widely praised for it accuracy.
posted by Carius at 9:02 PM on October 17, 2013
With the Light: Raising an Autistic Child is a Japanese manga, part of 7volume fictional works, but it was widely praised for it accuracy.
posted by Carius at 9:02 PM on October 17, 2013
Temple Grandin is where you start.
I just read her most recent book, The Autistic Brain.
posted by dfriedman at 9:14 PM on October 17, 2013
I just read her most recent book, The Autistic Brain.
posted by dfriedman at 9:14 PM on October 17, 2013
Let Me Hear Your Voice is 20 years out of date, but it's a really powerful story of parenting a child with autism and navigating the therapies they need. I have a relative who is autistic who is the same age as the author's son, and my relative is actually mentioned in the book; my relative used a similar set of therapies as the author's son. The book (though outdated) is recommended reading for a lot of psych classes and often given to parents of autistic children by doctors and therapists. It shouldn't be your ONLY book on autism, because it's limited and outdated, but it gives a good, accessible introduction, and many of the current state-of-the-art therapies are built on the ones described in the book.
I also enjoyed "Not Even Wrong," a father's memoir of his son's autism, as well as some narrative non-fiction about autism in history. I do like Temple Grandin's writing quite a bit, but her autism is pretty different from my relative's autism, so it's not as personally immediate to me as some other things have been. Which is maybe the most important thing to know -- a lot of doctors think autism is a similar set of symptoms with diverse etiologies ... that is, autism is maybe one thing, but is maybe a lot of different things that look sort-of similar, and there is no single clear "best" therapy or "best" treatment. There's a lot of trial and error, and different things work for different patients and families.
posted by Eyebrows McGee at 9:16 PM on October 17, 2013
I also enjoyed "Not Even Wrong," a father's memoir of his son's autism, as well as some narrative non-fiction about autism in history. I do like Temple Grandin's writing quite a bit, but her autism is pretty different from my relative's autism, so it's not as personally immediate to me as some other things have been. Which is maybe the most important thing to know -- a lot of doctors think autism is a similar set of symptoms with diverse etiologies ... that is, autism is maybe one thing, but is maybe a lot of different things that look sort-of similar, and there is no single clear "best" therapy or "best" treatment. There's a lot of trial and error, and different things work for different patients and families.
posted by Eyebrows McGee at 9:16 PM on October 17, 2013
When my son was first diagnosed, the book There's A Boy In Here was the one that really helped me wrap my head around the idea and begin to understand my son.
For all it is worth, I also have a blog and have written a book about my son. If you are interested, you can find the link to my website in my Mefi profile.
posted by Lokheed at 9:24 PM on October 17, 2013
For all it is worth, I also have a blog and have written a book about my son. If you are interested, you can find the link to my website in my Mefi profile.
posted by Lokheed at 9:24 PM on October 17, 2013
George and Sam is a great memoir by an parent of autistic boys because (1) the author is a journalist, so she writes well, and (2) she has two autistic sons and one neurotypical son. The autistic boys are very different to each other, as well as of course to neurotypical kids. So she has a lot of perspective and can avoid generalization.
posted by caek at 9:34 PM on October 17, 2013
posted by caek at 9:34 PM on October 17, 2013
The Curious Case of the Dog in the Night. Fiction, from the POV of an autistic young adult.
posted by jrobin276 at 10:41 PM on October 17, 2013 [1 favorite]
posted by jrobin276 at 10:41 PM on October 17, 2013 [1 favorite]
Matthew Baldwin has an autistic son. He blogs about him occasionally on Defective Yeti, but right now he's in the middle of "a month of son," 30 days of posts dedicated to that topic. My sister, who works in special education, recommends Born on a Blue Day.
posted by zanni at 5:02 AM on October 18, 2013 [5 favorites]
posted by zanni at 5:02 AM on October 18, 2013 [5 favorites]
I was just coming in to recommend Matthew Baldwin's "A Month of Son" series he's in the middle of now. It's just gorgeous stuff.
Shannon Des Roches Rocha is another amazing resource for information from a parent's perspective. Her personal website Squidalicious covers her experience from her son's diagnosis, through a whole host of treatments to her becoming an amazing advocate of neurodiversity and supporter of technology for individuals on the spectrum. She is also one of the editors at the Thinking Person's Guide to Autism, another amazing resource for unbiased information about autism, intervention, research and other related topics.
The book Making Peace with Autism by Susan Senator is another book that parents I've worked with have found helpful. Susan's personal blog also has some wonderful writing about her experience as an autism parent, and especially helpful, the process the family has recently gone through with her son transitioning from school to adult services.
The Autistic Self-Advocacy Network (ASAN), is an organization of individuals with autism spectrum diagnoses and is dedicated to ensuring representation and inclusion of folks with ASD as stake-holders in research, media portrayals of people with ASD, intervention, etc. Wrong Planet is a web community for individuals with ASD and their families providing information, support, and opportunities to just socialize and connect with one another.
Autism Speaks has a whole host of resources, including a First 100 Days Kit that walks families through the steps to take following an autism spectrum diagnosis. I would also recommend books by Travis Thompson as a starting point, especially Dr. Thompson's Straight Talk on Autism.
There are a ton of other really, really wonderful resources out there and I'd be happy to send along others. Feel free to meMail me.
posted by goggie at 5:23 AM on October 18, 2013
Shannon Des Roches Rocha is another amazing resource for information from a parent's perspective. Her personal website Squidalicious covers her experience from her son's diagnosis, through a whole host of treatments to her becoming an amazing advocate of neurodiversity and supporter of technology for individuals on the spectrum. She is also one of the editors at the Thinking Person's Guide to Autism, another amazing resource for unbiased information about autism, intervention, research and other related topics.
The book Making Peace with Autism by Susan Senator is another book that parents I've worked with have found helpful. Susan's personal blog also has some wonderful writing about her experience as an autism parent, and especially helpful, the process the family has recently gone through with her son transitioning from school to adult services.
The Autistic Self-Advocacy Network (ASAN), is an organization of individuals with autism spectrum diagnoses and is dedicated to ensuring representation and inclusion of folks with ASD as stake-holders in research, media portrayals of people with ASD, intervention, etc. Wrong Planet is a web community for individuals with ASD and their families providing information, support, and opportunities to just socialize and connect with one another.
Autism Speaks has a whole host of resources, including a First 100 Days Kit that walks families through the steps to take following an autism spectrum diagnosis. I would also recommend books by Travis Thompson as a starting point, especially Dr. Thompson's Straight Talk on Autism.
There are a ton of other really, really wonderful resources out there and I'd be happy to send along others. Feel free to meMail me.
posted by goggie at 5:23 AM on October 18, 2013
The vaccine connection has been disproven.
posted by Lescha at 6:33 AM on October 18, 2013 [2 favorites]
posted by Lescha at 6:33 AM on October 18, 2013 [2 favorites]
The Siege by Clara Clairborne Park is a really amazing book by a mother about her autistic daughter.
posted by colfax at 7:10 AM on October 18, 2013
posted by colfax at 7:10 AM on October 18, 2013
My stepson is on the spectrum and we have gotten tons of good information from our local university where they run a center based on spectrum disorders.UCF CARD. You may want to see if there is something similar in your area. Through constant socialization and positive encouragement he has become an amazing and sweet young man, now a Junior at the same university.
posted by white_devil at 7:42 AM on October 18, 2013
posted by white_devil at 7:42 AM on October 18, 2013
Shannon Des Roches Rosa is great. As is the TPGA book, but I'll cop to having been one of the copyeditors for part of that book, so I may be biased.
I would definitely encourage you to see out writing by people with autism, not just writing by their parents, educators, etc. In addition to Temple Grandin, take a look at Tito Mukhopadhyay, Jon Elder Robison, Donna Williams, Dawn Prince-Hughes, and Daniel Tammet. Lots more out there but those are some of the better-known places to start, and they may lead you to other books you want to explore. The ASAN is a great site and will lead you to lots of great perspectives by people with autism.
There are also some really great YouTube videos put together by people with autism who are more visual and/or nonverbal, and so aren't out there writing books or blog posts, but are conveying amazing things visually.
For an interesting and not-as-well-covered perspective on how experiences with autism differ globally, take a look at Roy Grinker's "Unstrange Minds." He is also a parent of a child with autism, though I haven't read this in a while so I don't remember how closely that's interwoven with the rest of his book.
I'm not really aware of much long-form writing from the siblings' perspective, but one book I'm aware of is Karl Taro Greenfeld's 'Boy Alone - A Brother's Memoir.' There were some things I did not love about that book, but it may be worth looking at. Their father wrote a series of books from his perspective of parenting Karl's brother Noah, that I keep meaning to track down, but have not yet done so.
posted by Stacey at 8:10 AM on October 18, 2013 [2 favorites]
I would definitely encourage you to see out writing by people with autism, not just writing by their parents, educators, etc. In addition to Temple Grandin, take a look at Tito Mukhopadhyay, Jon Elder Robison, Donna Williams, Dawn Prince-Hughes, and Daniel Tammet. Lots more out there but those are some of the better-known places to start, and they may lead you to other books you want to explore. The ASAN is a great site and will lead you to lots of great perspectives by people with autism.
There are also some really great YouTube videos put together by people with autism who are more visual and/or nonverbal, and so aren't out there writing books or blog posts, but are conveying amazing things visually.
For an interesting and not-as-well-covered perspective on how experiences with autism differ globally, take a look at Roy Grinker's "Unstrange Minds." He is also a parent of a child with autism, though I haven't read this in a while so I don't remember how closely that's interwoven with the rest of his book.
I'm not really aware of much long-form writing from the siblings' perspective, but one book I'm aware of is Karl Taro Greenfeld's 'Boy Alone - A Brother's Memoir.' There were some things I did not love about that book, but it may be worth looking at. Their father wrote a series of books from his perspective of parenting Karl's brother Noah, that I keep meaning to track down, but have not yet done so.
posted by Stacey at 8:10 AM on October 18, 2013 [2 favorites]
Following up - I was just chatting with Shannon a bit on Twitter and asked her for any better resources re: siblings. She sent out a call via the TPGA twitter account and so far someone has suggested this site, which looks pretty good, though it doesn' t appear to be autism-specific. You might want to check in on their Twitter account later on today and see if anyone else comes up with good advice/resources.
posted by Stacey at 10:20 AM on October 18, 2013
posted by Stacey at 10:20 AM on October 18, 2013
Our preschool son was diagnosed about a year ago. Here are some of the most important starting points, I think.
1. Take time to process, and try not to change your view of your nephew. Still the same kid.
2. autism is not one thing, and almost all conclusions you might reach by metaphor to "disease" are going to be wrong. It MAY WELL be caused by disease sometimes, but it's a trait/symptom - like intelligence or fever or introversion - NOT itself a disease. It's just like how intellectual disability coincides with many different kinds of genetic and environmental factors. Talking/thinking about autism as a SINGLE "thing" can lead to all kinds of wrong conclusions. Try to think "the autisms" and "autistic traits" and "degree of autism" and everything will make so much more sense. Some people with autistic traits may well have diseases, such as epilepsy, that are related to autism. But by itself the word "autism" just means someone has some particular behaviors or tendencies, which may or may not even be greatly disabling.
3. due to "the autisms" rather than "autism," the best resources really, really depend on the particular autistic person you want to know more about. For many autistics, sensory issues seem to be primary, while for my son (and myself to a fair extent) I really view autism as something more like a highly analytical mind that's simply terrible at social and motor skills. Some resources I found useful for us are here but as you can see, they may not apply at all to others. So look for books and materials that somehow match your nephew in particular.
4. also due to "the autisms" questions about causes and treatments are tough to answer generically. In our family's case, my father, uncle, me, and my son all have important traits in common, and there's no evidence of anything "biomed" whatsoever; it's just purely an inherited type of brain. But that doesn't mean all autism is like that - it isn't. I personally believe that some autisms are from a more general problem that has other symptoms too, and some are better thought of in the same bucket as intelligence, personality, and learning style rather than in a medical context.
5. unless you're very very lucky, nobody medical or educational is going to give you the right guidance, because they don't have time. The reason intensive early intervention is intensive is that that's how much time it takes to figure out and work with an individual kid - it takes many hours per week. Anyone not spending that time can't do a whole lot because they don't have time to even collect the data. Even for "high-functioning" or "asperger's" a ton of time is needed to understand and affect a child's development. So if possible, really focus on finding someone who intends to take the time required. In 30+ states now, private insurance is required to cover this; hopefully you are in one of them. In all cases, remember that the family and the child are the experts, and doctors and teachers often don't know or don't have time to figure it out.
That introduction past ;-) some things I've found very helpful:
* The best treatment, when it works on the particular autism in question, is probably behavioral. Probably by a good, respectful, experienced ABA practitioner who works in an evidence-based but flexible way. Unfortunately there are bad experiences out there from bad practitioners. From our experience, this post is quite accurate and informative on the ABA topic. However, note that in studies there are "responders" and "non-responders" to this kind of thing. It works on average. For some kids, it does nothing. For our son it's been amazing.
* For comprehensive science knowledge, if you can take it, try Autism Spectrum Disorders, Amaral editing, this is a doorstop research review textbook. But so helpful to get the raw data, if you like that sort of thing.
* For people in the HFA/Asperger's kind of area, Attwood's Complete Guide to Asperger's Syndrome was helpful.
* Thinking Person's Guide to Autism (the book) is a good overview of sane suggestions and insights.
* On prevalence, I found Grinker's discussion in Unstrange Minds pretty convincing. (my long take on diagnosis) Note that ADHD also has an "epidemic" as do many other newly-invented diagnoses when they are newly-invented. Doesn't mean the diagnoses are "wrong" just that they have been recognized.
* Why do people jump to vaccines and so on? The autisms are scary, mysterious, even the experts are mostly ignorant, and many parents are scientifically illiterate, given no real support, and pressured by relatives or misguided schools. It's easy to cling to a lot of nonsense. And even many things that are NOT nonsense when applied to autistic person A, ARE nonsense when applied to autistic person B, and that seems to be lost on all of us much of the time.
* Be skeptical and remember that causality is not correlation. For example, on gut issues, anxiety and stress may cause leaky gut and inflammation, so the physical condition may be because of the mental one, not vice versa. Who knows! Or for any condition that's painful or uncomfortable, it may exacerbate behavioral issues. That's not the same as that condition causing autism, though problematic behaviors may be improved if the condition is fixed.
posted by I14ng at 11:48 AM on October 18, 2013 [1 favorite]
1. Take time to process, and try not to change your view of your nephew. Still the same kid.
2. autism is not one thing, and almost all conclusions you might reach by metaphor to "disease" are going to be wrong. It MAY WELL be caused by disease sometimes, but it's a trait/symptom - like intelligence or fever or introversion - NOT itself a disease. It's just like how intellectual disability coincides with many different kinds of genetic and environmental factors. Talking/thinking about autism as a SINGLE "thing" can lead to all kinds of wrong conclusions. Try to think "the autisms" and "autistic traits" and "degree of autism" and everything will make so much more sense. Some people with autistic traits may well have diseases, such as epilepsy, that are related to autism. But by itself the word "autism" just means someone has some particular behaviors or tendencies, which may or may not even be greatly disabling.
3. due to "the autisms" rather than "autism," the best resources really, really depend on the particular autistic person you want to know more about. For many autistics, sensory issues seem to be primary, while for my son (and myself to a fair extent) I really view autism as something more like a highly analytical mind that's simply terrible at social and motor skills. Some resources I found useful for us are here but as you can see, they may not apply at all to others. So look for books and materials that somehow match your nephew in particular.
4. also due to "the autisms" questions about causes and treatments are tough to answer generically. In our family's case, my father, uncle, me, and my son all have important traits in common, and there's no evidence of anything "biomed" whatsoever; it's just purely an inherited type of brain. But that doesn't mean all autism is like that - it isn't. I personally believe that some autisms are from a more general problem that has other symptoms too, and some are better thought of in the same bucket as intelligence, personality, and learning style rather than in a medical context.
5. unless you're very very lucky, nobody medical or educational is going to give you the right guidance, because they don't have time. The reason intensive early intervention is intensive is that that's how much time it takes to figure out and work with an individual kid - it takes many hours per week. Anyone not spending that time can't do a whole lot because they don't have time to even collect the data. Even for "high-functioning" or "asperger's" a ton of time is needed to understand and affect a child's development. So if possible, really focus on finding someone who intends to take the time required. In 30+ states now, private insurance is required to cover this; hopefully you are in one of them. In all cases, remember that the family and the child are the experts, and doctors and teachers often don't know or don't have time to figure it out.
That introduction past ;-) some things I've found very helpful:
* The best treatment, when it works on the particular autism in question, is probably behavioral. Probably by a good, respectful, experienced ABA practitioner who works in an evidence-based but flexible way. Unfortunately there are bad experiences out there from bad practitioners. From our experience, this post is quite accurate and informative on the ABA topic. However, note that in studies there are "responders" and "non-responders" to this kind of thing. It works on average. For some kids, it does nothing. For our son it's been amazing.
* For comprehensive science knowledge, if you can take it, try Autism Spectrum Disorders, Amaral editing, this is a doorstop research review textbook. But so helpful to get the raw data, if you like that sort of thing.
* For people in the HFA/Asperger's kind of area, Attwood's Complete Guide to Asperger's Syndrome was helpful.
* Thinking Person's Guide to Autism (the book) is a good overview of sane suggestions and insights.
* On prevalence, I found Grinker's discussion in Unstrange Minds pretty convincing. (my long take on diagnosis) Note that ADHD also has an "epidemic" as do many other newly-invented diagnoses when they are newly-invented. Doesn't mean the diagnoses are "wrong" just that they have been recognized.
* Why do people jump to vaccines and so on? The autisms are scary, mysterious, even the experts are mostly ignorant, and many parents are scientifically illiterate, given no real support, and pressured by relatives or misguided schools. It's easy to cling to a lot of nonsense. And even many things that are NOT nonsense when applied to autistic person A, ARE nonsense when applied to autistic person B, and that seems to be lost on all of us much of the time.
* Be skeptical and remember that causality is not correlation. For example, on gut issues, anxiety and stress may cause leaky gut and inflammation, so the physical condition may be because of the mental one, not vice versa. Who knows! Or for any condition that's painful or uncomfortable, it may exacerbate behavioral issues. That's not the same as that condition causing autism, though problematic behaviors may be improved if the condition is fixed.
posted by I14ng at 11:48 AM on October 18, 2013 [1 favorite]
I'll nth A Month of Son. Beautiful, small, poignant pieces of writing.
posted by mmascolino at 1:11 PM on October 18, 2013 [1 favorite]
posted by mmascolino at 1:11 PM on October 18, 2013 [1 favorite]
Psst -- that's MeFi's own Matthew Baldwin! And I recommend his writing, too.
I have yet to find a book that I found matched my own experience of parenting a kid with autism, but A Parent's Guide to Asperger Syndrome and High-Functioning Autism: How to Meet the Challenges and Help Your Child Thrive is good for the basics.
posted by The corpse in the library at 3:05 PM on October 18, 2013
I have yet to find a book that I found matched my own experience of parenting a kid with autism, but A Parent's Guide to Asperger Syndrome and High-Functioning Autism: How to Meet the Challenges and Help Your Child Thrive is good for the basics.
posted by The corpse in the library at 3:05 PM on October 18, 2013
Prevalence - are autism rates going up?
More people are being diagnosed with it than used to be. Expanded definition, increased awareness.
posted by The corpse in the library at 3:07 PM on October 18, 2013
More people are being diagnosed with it than used to be. Expanded definition, increased awareness.
posted by The corpse in the library at 3:07 PM on October 18, 2013
> What is it like being the sibling of an autistic child
That's kind of like asking what it's like to be the sibling of a boy, or of a short person, or... But anyway. Here's one book that covers one woman's experience of having a sister with pretty severe autism: How to be a Sister: A Love Story with a Twist of Autism.
posted by The corpse in the library at 3:09 PM on October 18, 2013
That's kind of like asking what it's like to be the sibling of a boy, or of a short person, or... But anyway. Here's one book that covers one woman's experience of having a sister with pretty severe autism: How to be a Sister: A Love Story with a Twist of Autism.
posted by The corpse in the library at 3:09 PM on October 18, 2013
My first bit of advice would be that any interventions undertaken should be done with the intention of improving the child's quality of life rather than "curing" autism. Looking for an autism cure can send people down the rabbit hole of expensive, scientifically unproven and/or fraudulent, and even lethal "cures". More importantly, it's the idea of "curing or "rescuing" a child from autism implies that who the child is currently is not a real person, instead they are a changeling or a disease that is holding their "real" child captive.
posted by echolalia67 at 3:58 PM on October 18, 2013
posted by echolalia67 at 3:58 PM on October 18, 2013
Response by poster: Thank you so much everyone. I'm not tagging any favorites because it's going to take awhile to go through everything, check out books, etc.
Just want to mention that I am very confident that my nephew is not being treated like a sick person or 'changeling'. That's not the kind of parents my brother and sister-in-law are. He's an awesome kid just the way he is, and we all know it :)
posted by imalaowai at 9:17 PM on October 22, 2013
Just want to mention that I am very confident that my nephew is not being treated like a sick person or 'changeling'. That's not the kind of parents my brother and sister-in-law are. He's an awesome kid just the way he is, and we all know it :)
posted by imalaowai at 9:17 PM on October 22, 2013
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posted by radioamy at 9:00 PM on October 17, 2013