The White Flag?
Shortly after the Good Morning America segment on neurodiversity aired on Tuesday, I was asked to do an interview with CFRB in Canada, on the Leslie Roberts show. It was live and lasted for only about five minutes. Mr. Roberts focused on the notion of “curing” autism: Who wouldn’t want this? Why not support research into the causes of autism?
I talked more about acceptance and hope and education—about how it’s not about finding some magic pill, but that, through careful, individualized, and compassionate teaching and understanding, autistic children can learn, grow, and thrive.
I was asked if it’s just a matter, then, of waving a white flag. I asked for the question to be repeated: Mr. Roberts said something like, so is it just, surrender, just deal with it?
I said, not exactly; sure you have to deal with the realities in front of you. He repeated the notion of “surrender” and the conversation went on for a bit more, and then ended on the air.
But I kept thinking about that notion of “surrender” and of “jsut deal with it.” I don’t see my life raising my son as a fight or a “war on autism.” Autism is not the enemy, but ignorance and prejudice, and misunderstanding about what autism is (”mercury poisoning,” for instance) need to be addressed. How, how, how do you explain to people that Charlie splashing water in huge waves in the pool is not because he’s trying to annoy people, but because there’s something about splashing around water that does something for his sensory system?
Acceptance isn’t giving up and it’s not passive; it’s about understanding how your child is different, and that you the parent have to learn how your child’s different ways of communicating, thinking, and acting. You the parent are asked to change and, yes, to “deal with it.” But the only flag I’d ever wave is one in support of my boy who tries so hard to do good and do right in a world that’s less than ready for him; in a world that needs to change and make a space for him—autistic, different, and making a difference.
Tags: abc, asd, asperger, autism, autism blog, disabilities blog, Family, family blog, good morning america, leslie roberts, Parenting, pdd-nosRelated Stories
POSTED IN: Disability Rights, Media
57 opinions for The White Flag?
Cliff
Jun 13, 2008 at 3:24 am
*Sigh*
That’s a conception that really needs to be kicked, badly. It’s , I think, quite the farthest thing from that. In reality, you’ve more “waiving the white flag ” at your child when you are seeking to truly alter him/her, by the nature of the beast, then when you are accepting him as is and looking for progression without alteration.
And, yet, it’s amazing how solid the “tragedy” framework is situated with autism. Or just sad.
Cliff
Kristina Chew, PhD
Jun 13, 2008 at 5:22 am
Both—-if there’s anything to seek to “conquer,” it’s misunderstanding about autism.
Being a pacifist at heart, I prefer to be as harmonious as I can!
sharon
Jun 13, 2008 at 7:00 am
If only we could reverse the way people see priorities. Fine, let’s look for a “cure”. But first, we need to deal with all these kids and adults who need our help with education and therapy. This should be the priority.
Sharon (another one)
Jun 13, 2008 at 7:29 am
Good for you Kristina, getting out there and trying to explain to people how things really are. It’s clear that it’s going to be a struggle to get over the message of acceptance mixed with hope, understanding, education and accommodations.
I reckon the best flag for Charlie would be a big, bright sea-blue one.
(Oh and my boy is growing up to be more like him, not only has he learned to love the swimming pool, he’s become a great little cyclist too!)
Ammey & mikel kohen
Jun 13, 2008 at 7:38 am
I agree on acceptance. You always try to improve whatever you can to encourage your childs development but I do not feel like I need or want to wage war against my boys PDDs. A little educated understanding can really go along way with Autism.
Angela
Jun 13, 2008 at 8:07 am
Wow…. what a question. You handled that very gracefully.
Andrew
Jun 13, 2008 at 8:26 am
You might be interested in this. http://www.hawaiireporter.com/story.aspx?c7a22ef4-75bd-4313-b631-a26ad6705351
donald savitz
Jun 13, 2008 at 8:28 am
Kristina; What to tell the people about Charlie tell them to deal with it as that is what young childern do when the are having fun and that is their job. My childern did the same thing when they were swimming in the gulf of mexico when they where just having fun.
Synesthesia
Jun 13, 2008 at 9:32 am
That’s what I loved about the manga Within the Light. In the back they had some statements from various people.One said that autism isn’t something that you concuer but learn to understand and live with.
When they see autism in the most negative way possible, how can they really understand what it’s like for autistic people?
These folks claim that autistic people have no empathy, but are they showing empathy for people who have autism? Are they trying to make some attempt to see the world through a pair of eyes other than their own? I don’t see any of that in the mainstream view of autism.
Heck, even with children who are NT, and may like things that their parents don’t like or understand. Even they have people around them that don’t understand that they are different and need to be respected for it.
The world needs to change.
Awesome statements
Marla
Jun 13, 2008 at 9:46 am
Surrender is an interesting word. We have had times where we knowingly “surrendered” to situations with M. But, that never meant we gave up or stopped trying to improve her situation. Looking for a cure? No. Making progress and moving forward…yes. I bet doing interviews where they keep obsessing like that is beyond frustrating. You handle it with such style and grace.
Judi
Jun 13, 2008 at 9:52 am
I am a regular listener of CFRB and about a week ago Mr. Roberts was talking about vaccines and autism and people were calling in. The misinformation was terrible and I pulled over to turn on my cell to call. My cell was dead, unfortunately. It sounds like you handled your the question well. I am sorry I missed the piece, his show is on while I am at work.
I finally caught the piece on GMA and the footage of Charlie in the water made me cry…not sad tears…happy ones. It was wonderful to see him in his ‘element’ and every thing you and Ari had to say was terrific. Thank you.
Emily
Jun 13, 2008 at 9:55 am
Surrender? Only in the sense that understanding and attempting to follow the tenets of the Serenity Prayer is “surrender.” I accept the things I cannot change, I change the things I can (if they require changing), and I’m trying to grow the wisdom required to know the difference. That’s not “surrender,” that’s maturity.
daedalus2u
Jun 13, 2008 at 10:10 am
That mindset is a large part of the problem in addressing the needs of people with autism, the needs of families with autism, the needs of communities with autism and the needs of a world with autism.
There are very few problems that can be solved by adopting a “war” mentality.
Karen
Jun 13, 2008 at 10:46 am
Well-said, Emily. I also really liked what Synesthesia said about NT kids and their parents…I always say this to people — we don’t get to determine exactly who are kids are, disabled or not. THEY get to make choices and we need to respect their differences. Our job is to support.
ange
Jun 13, 2008 at 11:51 am
the only thing I have given up on is having a clean house (but that’s just as much because of my hubby as the boys)! A lot of other things I may put on the sidelines, but I address them when I am ready, the boys are ready, or it’s a priority. I definitely don’t feel “defeated” by my boys’ disabilities. Yes there are days I am overwhelmed, but usually it’s about what I have to deal with to get acceptance and accommodation, less about the boys themselves. And for me, we shouldn’t stop at acceptance. Acceptance seems like “tolerance” to me. We should all be VALUED. One step at a time though I guess. :)
Andrea
Jun 13, 2008 at 12:55 pm
Amen! I think the only way for people to totally get the acceptance thing is to be close enough–living, walking, eating, knowing–someone with autism. In the meantime you are doing something through your clear, calm, harmonious, informed, experienced resolve as the voice! I can identify with your harmonious/pacifist trait. Have you done Strengthsfinder? http://autismunplugged.blogspot.com/2008/04/strengthsfinder-just-do-it.html
Patrick
Jun 13, 2008 at 2:42 pm
Agh, more of the Epidemic attitude and talk.
My interpretation (for what it’s not? worth) is that once again a show host was trying to frame the discussion in pessimistic terms, instead of realizing the optimistic approach that can make one and one’s charge(s)/student(s)/offspring feel more self worth.
How depressing that Many people choose to live in the negative light.
Regan
Jun 13, 2008 at 2:48 pm
I’m sure he meant “surrender” in terms of “giving in to despair”, but that’s not the same thing as “dealing with it”. Dealing with it means doing what you need to do.
The white flag also means to parlay, to negotiate.
So negotiate and deal with it.
Tara
Jun 13, 2008 at 3:04 pm
Waiving the white flag can mean many things to many people. Yes, I’ll gladly waive the white flag, surrender and deal with it in this context…
If people like Mr Roberts expect me to go into all out attack ala Gallipoli instead, tough luck.
Phil Schwarz
Jun 13, 2008 at 3:49 pm
Kristina, you’re enough of a rhetoric-geek (I say this with total admiration) to rise up to your full intellectual stature and call the media out when they posit the tired old false dichotomy between “cure” and “acceptance”. Use those very words: it’s a false dichotomy. They are not opposites. Acceptance does not mean doing nothing.
mayfly
Jun 13, 2008 at 4:19 pm
Do you really not want to cure your children?
Are you not taking steps, hoping, yes praying so that your child is able to develop relationships with others. If so you are trying to cure an aspect of autism.
Are you helping your child, hoping your child, praying that your child will find enjoyment through social activities. If so you are trying to cure an aspect of autism.
Are you helping your child, hoping your child, praying your child learns to share his life with others. If so you are trying to cure an aspect of autism
Are you helping your child, hoping your child, praying your child learns to communicate. If so you are trying to cure an aspect of autism.
If your child can communicate are you making efforts so your child is more comfortable initiating and sustaining conversations with others. If so you are trying to cure an aspect of autism.
Are you helping, hoping, praying that your child develops an imagination and learns to imitate. If so you are trying to cure an aspect of autism.
Are you helping, hoping praying that your child handles transitions more smoothly. If so you are trying to cure an aspect of autism.
If your child is high enough functioning, do you want to instill knowledge of body language in your child. If so you are trying to cure an aspect of autism.
The above require in-the-main loving patient efforts to move the child forward. Forward means less autistic.
All the above are based on the DSM-IV criteria. I’ve left out repetitive speech, perseverations, and preoccupation.
I don’t know how you would teach a child not to be echolochaic. It’s also not something my daughter displays except an occasional word.
Her perseverations are not a concern as there are more pressing issues.
We are happy if she shows an interest in anything. She is compelled to splash in any water.
The above require tolerance by the outside world.
If there were a way of addressing those issues and that way was not hash, would you not avail yourself of it, or would you say it is better for my child to be burdened.
Regan
Jun 13, 2008 at 4:39 pm
“The above require tolerance by the outside world.”
Mayfly, the point for me is that the outside world could also put in a little work to do some of the heavy lifting–being echolaic or flapping hands or perseverations may not hurt anyone, except for how we view difference and perhaps learning to exercise a little more tolerance than is currently common. To put it all on the kid or stake it on “cure” may not only be improbable (because we really don’t know why some people have “good” outcomes under the same conditions and others don’t) but unreasonable as well. I think there are more possibilities in structure and society that could be considered if the hypotheticals never come to fruition.
Cliff
Jun 13, 2008 at 4:50 pm
“Are you not taking steps, hoping, yes praying so that your child is able to develop relationships with others. If so you are trying to cure an aspect of autism.”
And etc. from there
Dead wrong, actually. Not only are you simply enforcing stereotypes in certain areas, you’re confusing the condition itself with related symptomatology, flagrantly disregarding the underlying nature of the condition, and otherwise using a series of logical fallacies. Dead wrong.
And, no, forward is not “normal”. In fact, if you look at any kind of development of civilzation which you would take for granted, such things are dependent on a fashion on difference and on individuals who, actually, commonly present as spectrum individuals. It has always been the socially removed individuals who have been able to focus and develop specific areas of human knowledge, and (surprise surprise) that’s the defining aspect of autism itself! (Note, not eccentricity, which is socially distinct, not removed).
And I assume you realize that the DSM doesn’t really define a condition. It really doesn’t. It provides identifying symptomatology, but it never really defines a condition. Ever.
Otherwise, it’s just rhetoric, and some demeaning stuff at that. Do you honestly think people believe that it is simply a matter of leaving individuals “burdened”? What a painfully simplistic view!
And, no, loving is not necessarily less autistic. Seeing the value in human beings that are different and seeing the potential in everybody to provide something special to society and to recognize the differences in individual existence is hard, brave, and valuable in general. Homogeneity should never be a goal amongst people; this is a regressive, egocentric, and threatened vision you have put forth. I would rather have something greater that encompasses a world that is not only more interesting, but more valuable for it.
Cliff
a long-time poster
Jun 13, 2008 at 4:51 pm
@mayfly
I think, to the general public, cure means to erase the “burden” in whatever way possible. You, mayfly, used the word “burden” in your post. It’s up to the autie to determine whether or not they feel a burden. It’s up to the autie to decide whether or not they are interested in that most-nebulous of things (because no one can still quite define it): a cure.
This straw-man thing, of late, of auties not growing and changing over time is tiresome indeed. There’s a reason, mayfly, that autism used to be defined in the DSM as “infantile autism” because kids changed so much as they grew up. All the things you list in your reply are things any decent parent would do to parent any child.
Remember CURE Autism NOW began as a campaign to find a medicinal remedy to give to a child who was perceived as an “empty shell”. To like re-animate the child. Make that child a completely new being. Tom Insel agreed by stating that autistics “lacked personhood”. He’d bought into Jon Shestack’s fable. Sadly so have people like Diane Sawyer.
Tara
Jun 13, 2008 at 5:47 pm
“All the things you list in your reply are things any decent parent would do to parent any child.”
True. I had this epiphany long time ago, before I even had autistic children. There was an autistic woman on my pregnancy mailing list and she mentioned that she is parenting her two NT daughters in the same way she would parent them if they were autistic because it seems to be common sense anyway: you set boundaries, you set routines, you take care of their needs and you find a way of teaching them what they need to learn. All of this applies to any parent and any child, nuances will differ.
Incidentally, once she “came out” as autistic she was asked the inevitable question, quote:
“if you are autistic, why are you having kids?”
Kristina Chew, PhD
Jun 13, 2008 at 5:51 pm
This is just throwing another thought into the thread: “Cure” and “care” are from the same Latin word, cura, which originally means “care, trouble,” as in “taking care/trouble” of someone/thing. The notion of cura meaning a “remedy” comes much later and I think when people talk about “curing” autism, that notion of “taking care” of a child is there. But I don’t think that doing so requires “getting the autism” out of a child.
Cliff
Jun 13, 2008 at 6:05 pm
“Incidentally, once she ‘came out’ as autistic she was asked the inevitable question, quote:
‘if you are autistic, why are you having kids?’”
Oh, lord…
Cliff
Ammey & mikel kohen
Jun 13, 2008 at 6:07 pm
Just have to say… I would really like to see Christina or some of the other commenters in the media more often. *I am thinking Oprah*
I just feel what everyone is saying and it is so refreshing. Things are not ideal with my boys, but even with the challnges they face and we face as a family, they are such a gift to the world. I do not like the trend of negative portrayals of ASD’s in the media, especially lately. Things definitely get tough at times (and often), they do but there is so much life, so much laughter, so many neat ideas and so many special moments that I never feel burdened by there ASD traits. Tired maybe but never burdened. I feel blessed to be their mom actually. They seem to like who they are too at the moment, I wish that the public eye was more understanding and accepting. I say we have a pool party…my boys get kinda crazy in the water, they love it’s movement (when they cause it it’s even better!).
I agree with [a long-time poster], it is more important how the person w/ an ASD defines or expresses what a burden is to them.
Tara
Jun 13, 2008 at 6:18 pm
@Cliff,
FWIW, one good thing I have to say about that incident is that it was one lone voice asking that question and many other list members (one of them deaf) jumped right in to let that person (and I use the term loosely here) know that the comment was despicable…
Beth
Jun 13, 2008 at 10:07 pm
It’s just so complicated.
I am going to think of a really basic way (like a soundbite) to explain it and it will probably take me months because it is just so complicated.
If there were a magic eraser that could erase Nicholas’ Asperger’s, then Nicholas would disappear. Period. And I love him (as is) sooo much that the thought of a world without my Love Bug is just unbearable.
We need to find ways to help those with all forms of autism to overcome the obstacles without losing who they are. Some of Nicholas’ biggest challenges come from having Asperger’s. But some of his best and most beautiful qualities also come from having Asperger’s and if “curing” him means erasing my beautiful boy then I don’t want to cure him.
How do you put that into some kind of soundbite that can capture the public’s imagination? It’s an uphill battle and I thank you, Kristina, for leading the charge.
Emily
Jun 13, 2008 at 10:20 pm
How about, “I don’t want a cure to kidnap/steal/abduct my child.”
Cliff
Jun 13, 2008 at 11:01 pm
“I don’t want a cure to kidnap/steal/abduct my child.”, or perhaps the more inclusive “Autistics don’t need to be kidnapped/stolen/abducted by a cure” is a good place to start, though actually “If there were a magic eraser that could erase Nicholas’ Asperger’s, then Nicholas would disappear. Period.” has a particularly nice ring to it. (Though, of course, you’d have to make it more general)
Cliff
mayfly
Jun 14, 2008 at 1:28 am
@Cliff and Long Time. Thank you very much for your posts. Yes, I’m talking about autistic infantile autism AKA autistic disorder. My daughter is low-functioning. I don’t think people with Asperger’s are burdened. Children such as my daughter are burdened. Please note that I said my daughter and not I. Stating that one thinks their autistic child is burdened always brings reponses like, “Well my autistic child is not a burden to me.” My daughter I’m sure has brought me as much joy, if not more than your children. Her autism has a negative impact on her life. Please tell me how that is not so.
Logical fallacies. Are you saying that if one could relieve an autistic person of all their symptoms, they would still be autistic? There are people who come off the spectrum. Are all of them misdiagnosed, or are they “cryptoauties”. I find the term autie to be a little too cute. It trivializes the condition.
Lot’s of people wrote in to say any parent wants to help his child. True. You might even say you are not trying to cure your child’s autism. However you are certainly trying to mitigate it. Also, no one would stop trying to help his child, if the symptom the palliation addressed was becoming extinct.
I believe your argument is that the person is just as autistic no matter how successfully mitigated the symptoms. In my simplistic view that is not true.
The person who has become social and can express themselves has become less autistic. If not, then you have chosen a definition of autistic disorder which I cannot find.
Society is advance by whom? Please provide some examples. I’m interested in part in what you consider social advancement.
Sure autistic children grow, but low-functioning children grow at a slower rate, and some relapse. Many have “infantile” autism throughout their lives. They cannot express themselves whether their lives are burdened.
I never thought my daughter to be an empty shell. She was at one time very much in her private world without interest in anything going on around her.
It is not always possible to teach low-functioning children what they need to know.
You address the problems of people whose primary barrier to functioning in society is in tolerance.
There are those who cannot function because the same process which caused a slight miswiring in an Asperger’s brain did far more damage to in the brain of a person who is low-functioning.
Cliff
Jun 14, 2008 at 2:12 am
“Are you saying that if one could relieve an autistic person of all their symptoms, they would still be autistic?”
You know, I don’t liked the question as phrased, because I know you’re talking about insofar as people qualifying for the DSM. The simple answer, however, would be, theoretically, yes. Here’s why; you can make a person present differently and act different as to make it different from the way they would normally think without necessarily changing their brain structure, as a facade. Now, I don’t think this is quite the case, because it rests on a hypothetical that wouldn’t likely happen (you simply don’t have the radical behaviorist-type changes happen in individuals). But, but, in so far as individuals “slip” off the spectrum, I think that’s a myth. Having made that kind of difference myself, I would absolutely say that you can change those behaviors without changing the underlying autistic structure of the brain. And I think that’s the genuine cases in those “recovered” individuals. Because the condition itself isn’t actually dependent on its symptomatology, as I noted. The symptomatology describes an appearance; it never truly defines the condition. Until you can phrase it in terms of a nominative, you’re not there yet.
The rest follows from there. No, it’s not inherently mitigating autism itself. No, it’s not an easy matter of “more or less autistic”, because it is dependent on a skillset, not the condition itself. (you can easily have two individuals who, despite the structure, have been trained in certain ways, but not as such to change the condition). No, people absolutely stop helping a child once the appreance goes away (or, as you say it, if the symptom the palliation addressed was becoming extinct). Ask my entire elementary and post-elementary educational selves, they’d give you straight answers on not being helped appropriately because, though they presented “normally”, the lack of accommodation made things so difficult as to lead to near-death stress experiences and clinical depression.
By “advancement”, I’m referring to many of the scientific and intellectual developments since, well, probably logner, though I’m thinking about Enlightenment figures and modern scientists and inventors. Actually, play a game of symptomatology for a second and compare the stereotype of HFA to the stereotype of a genius. No small deal. Further look into the biographies of some of those geniuses who had speaking delays. I know you can try and say they’re not autistic, but even by your rules it’s clear that at least HFA has directly lead to larger intellectual advancements.
Yes, some autistic individuals learn at a slower rate. This is a “no duh”, if you recognize that typical learning is always based on social communicative forces. However, an autistic individual (I can’t really speak to the potential of some individual “autistic” populations, but in general) can learn to engage in these channels despite a predisposition that makes this more difficult.
And, yes, it is harder to live without social understandings and information. I know this better than most, and can better yet tell you exactly why (though I won’t, that’s a really, really long comment!). But it does not invalidate the existence of these individuals. I would rather revert to an unpredictable world of no socially communicated understandings than be not autistic, and I say this not as rhetoric; if faced with this option, I would do it without so much as a second thought. It’s a harder existence, yes, but a valuable one, and one that was ultimately interesting and had a perspective that was interesting, had less assumptions, and had a different sense of reality. It shouldn’t be favored over a social existence with one’s (yes, autistic) mind there, but it is not a valueless existence at all.
And as much as one likes to talk about “slight miswiring” versus “damage”, it’s not that simple. An autistic brain is an autistic brain, and the symptomatology says nothing about that itself. By saying this, you’re making a slew of assumptions that aren’t warranted or validated.
Cliff
Cliff
a long-time poster
Jun 14, 2008 at 2:25 am
@mayfly
I’m not talking about Asperger’s, mayfly. I never said that and I don’t know why you think I might have implied that. I think you might be surprised to know just how many varying ASD diagnoses many on the spectrum get over the years. To gain a better understanding, may I ask the age range of your daughter?
“Are you saying that if one could relieve an autistic person of all their symptoms, they would still be autistic?”
Yes, because one would still think and view the world from an autistic perspective. It’s not about “behavior” it’s about “being”.
Melody
Jun 14, 2008 at 5:08 am
Another thing to keep in mind is that what from the outside can look like zero engagement with environment/people, probably isn’t. A lot of timese throughout my life, because of repetitive activities, a blank stare, not responding, etc., I’ve been interpreted as not being aware of what’s going on around me, which wasn’t true at all.
kyra
Jun 14, 2008 at 8:32 am
kristina! thank goodness for you and your thoughtful responses to these questions! i’m not sure if those outside of the world of autism can really get at the heart of it. we don’t ‘just deal with it’, we love, accept, and celebrate our kids as we also work to understand them and provide for their biggest growth. and work to change the world’s perceptions.
Kristina Chew, PhD
Jun 14, 2008 at 12:08 pm
@Melody, that was precisely my point about Charlie putting his hands over his ears—-a way of helping him focus better, not tune out.
@Judi, I didn’t have too much time to look up the show and see what it was about—I find myself doing some verbal sparring in my day to day life and somehow I wasn’t surprised to find myself doing this with Mr. Roberts!
Some say it’s just “semantics” to talk about “miswiring” vs. (for instance), “faulty brains,” “malfunctioning,” etc.. I do think it makes a difference in how one (unconsciously) approaches raising a child. Certainly I note a shift in me when I stopped thinking so much about “recovery” and what’s “normal” and “appropriate.”
Ettina
Jun 14, 2008 at 2:20 pm
“Are you saying that if one could relieve an autistic person of all their symptoms, they would still be autistic?”
Two things:
Firstly, some higher functioning autistics can, like many gay people, hide their difference very convincingly. This is not a pleasant life to lead.
Secondly, autism is so often seen as a single ’snapshot’ that defines the child’s development, as if a nonverbal stimming 3 year old will always act just like they do at 3 years old. That’s not true for any child, regardless of disability. And the line between autism and other disabilities and normality is not a clear one. Children grow and change, and for some, they cross diagnostic lines. This doesn’t mean they’ve fundamentally changed, just that our diagnoses aren’t taking into account the dimension of time.
Is a child who grew from a nonverbal, stimming 3 year old into a sociable, hyperactive, talkative 7 year old really a different child, just because their diagnosis has changed from autism to ADHD? No. That’s just their developmental path. That child is as much the same person they were as any 7 year old is the same person they were at 3. But people don’t tend to see that.
Autism is defined by a set of behaviors, but those behaviors aren’t just stand-alone things. They are caused by underlying traits - cognitive style, motor planning, sensory processing, emotional pattern, etc. The same trait can cause different behaviors in different circumstances, and kids can also learn to change how they act to a certain degree. It’s just like being gay isn’t having sex with someone of the same gender, but a long-term pattern of feeling sexual attraction to the same gender, combined with varying other differences such as different mannerisms.
As for whether LFAs are burdened - yes, I think they are. But not by autism. They are burdened by being in a society designed for people so different from them that they cannot function. And we don’t know what these people would look like in a different society, better designed for people like them. We don’t know what is a direct result of the type of brains that these people have, and what is because they don’t understand and are not understood. But if you work with your daughter and her autism, rather than fighting it, you can begin to discover that. And by her autism, I’m not meaning the specific behaviors listed in the DSM, but the ways in which her thinking, her perception, her feelings, her movement style, etc differ from normal.
mayfly
Jun 14, 2008 at 3:39 pm
@longtime she just turned 11. We have seen great advances in behavior and general awareness of things going on around her.
She has not developed a good method of communication. She’ll bring us a glass if she’s thirsty that sort of thing. We are now trying a yes/no box with her. Her selections are random. She gained knowledge of the uses of a handful of items, but doesn’t know their names. She follows some simple imperatives, but doesn’t know the objects of the command. Please pick up the book! is just as likely to result in bringing you a sneaker.
She takes very little ,if any interest in others.
She is a very happy child, which was not always the case. That is by far the biggest change we’ve seen. That change may be somewhat pharmacologically based, but I think it has more to do with her maturing.
I don’t know if she could find her away home from a block away. She does recognize the house, so perhaps. She has no concept of the dangers things such as cars can pose.
She is not incapable of learning. She learns best things which are incorporated into her routine. Though trying to introduce new things into that routine is often met with failure.
We know many families with special needs kids are the church we attend has great programs for them. We these kids soon becoming able to d things are child cannot. We are happy for those children and their parents, but also wish our child would gain more abilities. I have the same bittersweet feeling reading about Charlie’s accomplishments. We are not asking for a trophy child. We would like her to develop enough to be able to communicate should she be abused. We would like her to have more life skills. We would like her to have friends. Autism is the impediment to her acquiring these things. In some cases that impediment is partially overcome in others we have not been able to make inroads.
Kristina Chew, PhD
Jun 14, 2008 at 6:39 pm
@mayfly, for some reason I thought your daughter was much younger—so she and Charlie are the same age.
@Ettina, I truly think that if Charlie could talk as well as any child of his age, what he would say would not be “normal” or “typical,” but vintage Charlie of the sort I know well from having known him all these years.
mayfly
Jun 14, 2008 at 8:35 pm
@Kristina, She’s a few days older.
mayfly
Jun 14, 2008 at 8:53 pm
Ettina, it is not society that prevents her from functioning it is her autism. With a couple of exceptions society has treated my daughter with great kindness.
Is her present inability to communicate attributable to society. No, it is her autism. Is her developmental age attributable to society, no it is her autism. Is it society which will be responsible for her probable need for care to accomplish even the simplest tasks, it is her autism.
So far society hasn’t failed her. Perhaps I have failed her. Perhaps people believe low-functioning autism to be a burden because it actually is one
a long-time poster
Jun 15, 2008 at 12:16 am
@mayfly
Thanks for answering my questions along the way in your detailed reply; I appreciate it and I understand better now in regards your particular situation. I wish I could explain mine in detail, but I can’t. Suffice to say, though, I saw a lot of good treatment (ie therapy)/education options cast aside when “cure” became the order of the day and it had everything to do with that elusive, medicinal, magic-cure-pill which would reanimate the “soulless, lacking-in-personhood” individual. This was very much what was going on in my locale and precisely what “cure” meant. Your daughter sounds lovely. If I may ask: What are her favorite activities? Also, does she have a 1:1 working with her?
Cliff
Jun 15, 2008 at 12:27 am
“Ettina, it is not society that prevents her from functioning it is her autism. With a couple of exceptions society has treated my daughter with great kindness.
Is her present inability to communicate attributable to society. No, it is her autism. Is her developmental age attributable to society, no it is her autism. Is it society which will be responsible for her probable need for care to accomplish even the simplest tasks, it is her autism.
So far society hasn’t failed her. Perhaps I have failed her. Perhaps people believe low-functioning autism to be a burden because it actually is one”
Given that education is directly attributable to function, and that education is given by society (ideally in the form of a reasonable fashion open to all), it’s not so simply to just say “isn’t culpable at all”. It is structured to work for individuals that, without that structure, wouldn’t “function” as you imply. I am not saying there aren’t difficulties inherent with teaching an autistic mindset socially-inherited tasks (which almost is “everything”, actually), but it isn’t an absolute nor vindicated for that responsibility.
Cliff
TomsMom
Jun 15, 2008 at 8:40 am
@mayfly (and by extension others here)
“I don’t think people with Asperger’s are burdened.” Please think again: Tom may be verbal but when he talks he is not communicating. He does not understand why others do not understand him–nor can he fathom them. I can see his pain and bewilderment every single day, and it IS a burden to him that we can only “deal with” as we can.
That being said, I have hopes that the various interventions, including those we use at home that are probably similar to those employed by any parents with children on the spectrum, will have positive results. Because he is high-functioning he may be able to do more and “fit in” better in society (eventually, when he learns to modify his behavior to suit the rest of the world) but it won’t be easy, it won’t be natural, and he will struggle: as do we all.
mayfly
Jun 15, 2008 at 12:40 pm
@longtime. Yes she has a one-on-one aide. As you can imagine she’s in a special class. The purpose of the class is to teach her life skills.
She loves being in the water, paddling supported by her armbands. She likes sitting on the arm of the chair I’m in while I read “Good Night Moon.”
She likes me to sing to her. She likes me, someone with two left feet and absolutely no sense of rhythm to “dance” to the Wiggles tapes.
Just to complete the picture: My daughter had language at one time, getting as far a simple requests. She could name nearly everything around the house, and at outside as well. She was very good at generalization, recognized letters of the alphabet. She delighted in revealing “Got the ‘Q’, as she sat in my lap as I played scrabble with her mother.
She never developed any social language, no Hi’s or by’s, never called us Mommy and Daddy. She never babbled, never had any separation anxiety, if we left her with her grandparents whom she saw perhaps twice a year. She had a great many autistic traits, that she probably could have been diagnosed long before her first birthday instead of close to her third. The regression, perseverations, and withdrawal from the world happened fairly rapidly right around her second birthday. I don’t think anything happened to her post partum, but that many aspects of autism do not manifest until the child is a couple of years old.
What therapies/educational method were dropped when people spoke of a cure?
@Cliff. Just as there isn’t a magic pill my daughter can take, there isn’t currently some magical teaching method by which she can learn. Her problems stem not from improper teaching methods, but from her autism. The only teaching method is patience, love, and to keep trying to teach her, and to fight the feelings of futility.
@TomsMom. I understand your situation. My daughter doesn’t care about her lack of social integration. I can empathize with your son’s pain of trying to be social and being rejected as he doesn’t understand the rules which are so often situational.
Kristina Chew, PhD
Jun 15, 2008 at 12:48 pm
@mayfly, I suspect (this is my hunch) that Charlie would like to be more included socially. But the extent of his communication disability and his anxiety (which can manifest as difficult behaviors) prevent doing this as much as we’d like. So what tends to happen in group situations is that he tries as hard as he can for a short period of time; if it’s in his school class, things are fine. But if he’s in a situation with strangers (as in the airport last Friday morning), he quickly gets extremely anxious, extremely.
Navi
Jun 15, 2008 at 1:14 pm
On the pool comment, my recent experience was quite different. After people realized Tristan wasn’t drowning (he was flailing and bouncing off the floor of the pool and there were a lot of mom’s going on ‘autopilot save the kid’) they quickly switched to showing their toddlers - ’see he’s holding his breath and putting his head under water, see, he’s having fun, you can too!’
Cliff
Jun 15, 2008 at 4:03 pm
“@Cliff. Just as there isn’t a magic pill my daughter can take, there isn’t currently some magical teaching method by which she can learn. Her problems stem not from improper teaching methods, but from her autism. The only teaching method is patience, love, and to keep trying to teach her, and to fight the feelings of futility.”
Yes, the task is difficult. But in so far as a “magic teaching method” (read: a more intense version of any kind of learning whatsoever), it is far and away well possible for her to continue to learn certain skills and abilities. As you basically noted. But, yes, it is a more difficult task, to be sure.
Cliff
David Elliott
Jun 16, 2008 at 11:46 am
I’m writing from Toronto. I do not listen to CFRB and especially Leslie Roberts.
Roberts likes to overtalk guests and interrupt to steer the dialogue his way. This is his manner and it’s a grating thing for the guests and callers.
That’s probably why he’s on the fifth-ranked radio station in the late morning.
The station, CFRB, once was a very influential station and had high esteem with the listening public. Today, it’s a cadaver filled with talk radio and no-talents to make it happen.
If there were no cell phones and if Toronto’s traffic wasn’t as bad as it is, then CFRB would have to come up with quality programming.
It’s a pity you didn’t get interviewed by the CBC.
Canadian Broadcasting Corporation is streets ahead of all the other stations for asking meaningful questions and getting substantive interviews.
Here’s hoping that the next time will be with a worthy broadcaster and radio station.
Regan
Jun 22, 2008 at 8:01 pm
Genuine question and genuinely interested in the response.
How would you feel about something like this, or the potential of this, since this is currently demonstrated in a mouse model, with the usual caveats?:
Drug reverses mental retardation caused by genetic disorder
http://tinyurl.com/5avaum
Reversal of learning deficits in a Tsc2+/- mouse model of tuberous sclerosis
Dan Ehninger, Sangyeul Han, Carrie Shilyansky, Yu Zhou, Weidong Li, David J Kwiatkowski, Vijaya Ramesh & Alcino J Silva
Published online: 22 June 2008; | doi:10.1038/nm1788
Kristina Chew, PhD
Jun 22, 2008 at 8:05 pm
Curious, with the usual caveats—-what is “mental retardation” in a mouse vs. a human being, and what is “intelligence”—–
Regan
Jun 22, 2008 at 8:14 pm
I haven’t had a chance to look at the entire paper, but this is their abstract of what they were looking at,
“ABSTRACT
Tuberous sclerosis is a single-gene disorder caused by heterozygous mutations in the TSC1 (9q34) or TSC2 (16p13.3) gene1, 2 and is frequently associated with mental retardation, autism and epilepsy. Even individuals with tuberous sclerosis and a normal intelligence quotient (approximately 50%)3, 4, 5 are commonly affected with specific neuropsychological problems, including long-term and working memory deficits6, 7. Here we report that mice with a heterozygous, inactivating mutation in the Tsc2 gene (Tsc2+/- mice)8 show deficits in learning and memory. Cognitive deficits in Tsc2+/- mice emerged in the absence of neuropathology and seizures, demonstrating that other disease mechanisms are involved5, 9, 10, 11. We show that hyperactive hippocampal mammalian target of rapamycin (mTOR) signaling led to abnormal long-term potentiation in the CA1 region of the hippocampus and consequently to deficits in hippocampal-dependent learning. These deficits included impairments in two spatial learning tasks and in contextual discrimination. Notably, we show that a brief treatment with the mTOR inhibitor rapamycin in adult mice rescues not only the synaptic plasticity, but also the behavioral deficits in this animal model of tuberous sclerosis. The results presented here reveal a biological basis for some of the cognitive deficits associated with tuberous sclerosis, and they show that treatment with mTOR antagonists ameliorates cognitive dysfunction in a mouse model of this disorder.”
Kristina Chew, PhD
Jun 22, 2008 at 8:29 pm
This point stood out to me, from here:
So would an increase in “intelligence” be a lessening of this “meaningless noise”? This makes me think of Charlie’s propensity to hyperfocus on somethings and struggle to direct his attention to others: He’ll get stuck on the shapes of the letters and then struggle to understand the sounds and phonics.
—thanks for posting the abstract from Nature Medicine
Cliff
Jun 22, 2008 at 10:40 pm
Oooh, curious…
Of course, with mice, it’s hard to say exactly what the changes are (mice aren’t going to get at those subtle details). So that makes it hard to say.
I’d also like to know how they knew it was “exactly the same condition” as typical autism seen in humans. In other words, how much are we looking at a subset of autism or not? Do we know what the outcomes of this group are when provided specific education for autism (ABA is one, though I’m not limiting it to that) versus the rest of the autism population? I can’t say I know enough to say if tuberous sclerosis autism would resemble the autism that myself or Charlie would have.
In my experience, with the “overfocusing/underfocusing” thing, it largely seems that it’s a matter of social communication and isn’t actually all that innate as to the “important details”. Indeed, I see such things missed by non-autistics once the category gets out of the “commonly socially communicated” category (say, take an English speaker learning a foreign language. Until there is more training as to where to focus, the focus is dictated by previous experience with language, not with the meaning).
So… lots of questions, before a more solid opinion.
Cliff
Rapamycin Reverses Learning and Memory Deficits in Mice
Jun 23, 2008 at 4:41 am
[…] commented about the study on an earlier post; the researchers’ association of intelligence with learning and memory is particularly […]
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