Parenting Isn’t Easy, Period—and I’m Very Glad to Be a Mother
May 11, 2008 by Kristina Chew, PhD
Filed under Health
First, Happy Mother’s Day to every mother reading this and many more (my own included, of course)!
An essay by Robert Hughes in today’s Chicago Tribune is entitled What Autism Means to a Father and much of what he says strikes home with me as a parent. Hughes captures how a parent feels as he or she strives so patiently to help an autistic child, and how bad a parent can feel when you’re not “doing the right thing,” even though you’re trying your best.
Hughes’ son is 21 years old and, on being asked about the “meaning of the latest statistic on autistic births”—that 1 in 150 children in the US have autism—-Hughes offers this “emotional, seldom-discussed meaning to the 1 in 150 statistic”:
It means that the chances are growing alarmingly that my friend [a work colleague] or someone he knows will one day have an autistic child. And as an old veteran of the autism war, let me tell you what that means.
…..
It means your colleague will sometimes feel so proud of his parenting skill that he would like to brag but doesn’t for fear of making you feel inadequate. He may show up for work after having been up all night with his screaming autistic son, but he’s happy because:• He never raised his voice.
• He never shook his fist at the boy.
• He dreamed up several different and creative but ultimately futile ways to distract and interest his child, always speaking in soft, firm and reassuring tones even though the kid was running through the house, shouting, biting him and leaping up and down.
He knows you and 90 percent of other parents couldn’t have handled the riot as well as he, so he feels, this morning at least, like a paragon of parenting.
It means, though, that the next morning when your friend arrives at work, he feels as though he belongs in jail. He had spent a second night up with his child speaking in soft, firm, reassuring tones—that is, until he lost it, hit his kid, yelled at his wife, sobbed afterward, and so is now certain he’s the worst sort of monster dad in existence.
He has seen the best and the worst of himself, has been St. Francis and Vlad the Impaler in such quick succession that he’s dizzy with sickening self-discovery.
It’s not easy. When you’re trying to shove a pillow in the general direction of your son’s forehead, as he is trying to slam it on the ground, and your husband is trying to hang onto your son and telling you to get ice, it’s hard to stay in control, no matter how much parent training you do. What parent hasn’t yelled or said some angry, terrible thing and wished that she or he could take it back?
I know it’s not easy being a parent, period. I’ve had a number of conversations with parents of my students in the past few weeks—sometimes with both the parent and student sitting opposite from me in my office—and hearing phrases like “how did this happen?” or “what is going on?” and wishing I had a box of Kleenex handy, remind me, yes, parenting’s not easy for anybody.
One difference for Jim and me as Charlie’s parents is that he has so little language to answer any questions and, due to his neurological make-up, he’s sometimes on the ground even before we realize he’s upset. But rather than continually mourn the fact that Charlie’s different, we’ve tried to change ourselves so we can best help Charlie. Charlie expresses himself plenty in non-verbal ways and part of being Charlie’s parents is understanding Charlie on Charlie’s own terms. A very big part of being Charlie’s parents is accepting him and loving him as he is, while encouraging and supporting him to learn and progress.
I know that the thought of having an autistic child can be scary—even unthinkable—-to a parent who has a young child and has read too much about topics like vaccines. In the May 11th Chicago Tribune article about the not-uncontroversial notion of “recovery from autism,” Julie Deardorff writes:
One of my greatest fears is that autism will break into my house and steal my son. It may be irrational, but it’s there: He’ll wake up one morning and vacantly look through me. He’ll lose his words, open and close doors for three hours, or begin screaming, as if in pain.
Then, bam! The child I know and desperately love will disappear into a mysterious world where I can’t reach him.
Deardorff writes about the “recovery movement” as being “stronger than ever, in part because actress, model and author Jenny McCarthy went public with her own sobering journey after her son, Evan, was diagnosed as being autistic.” Deardorff quotes Talk About Curing Autism (TACA) founder Lisa Ackerman, who says that recovery is
“…….like a car accident, where some individuals may die and some receive different wounds…….You can’t be cured, but you can recover through treatment and time to heal.”
I’m not quite sure how “recovery from autism” can be compared to a “car accident”—-is the process of “recovering” or “curing” a child from autism being likened to getting into an accident? When Ackerman says that “some individuals may die,” is she suggesting that some children “may die” in recovery? Ackerman makes a distinction between “cure” and “recovery,” terms that are usually equated in discussions about autism; I’m not sure that the terms are too different.
Deardorff refers to the “fledgling neurodiversity movement” in discussing autistic adults who believe autism is not a disorder but a difference, and that “‘recovery’ is an upsetting concept because it implies they have something to recover from; it’s a loss of identity.” Autistics like Alexander Planck, founder of founder of WrongPlanet.net and a student at George Mason University, are said to be “high-functioning” and also “functioning member[s] of society,” and are contrasted to severely autistic children who may be non-verbal, have violent and aggressive behaviors, and minimal academic ability.
This is a familiar contrast, between “hfa and lfa” autistic individuals, between those with Asperger’s and those who (like my son) are “classically,” even severely autistic. I understand why there is a need to make a distinction (indeed, the very suggestion that there might be a deep and underlying similarity between an Asperger’s adult and a non-verbal autistic child seems to bring out strong feelings of ambivalence and more). As my son has gotten older, and we’ve more of a sense of his limits and abilities (and of his potential to surprise us), the very things that cause him the most difficulty—anxiety, catastrophic thinking, obsessive-compulsiveness, sensory sentivities—are the same sorts of things frequently cited by some autistic adults I’ve spoken too, and certainly getting to know adults on the spectrum has helped me to understand and help Charlie, in many, many ways.
if there’s one thing parenting has taught me, it’s that, as a parent, I sure don’t have all of the—or any—answers. I know what behavioral strategies I should use; that Charlie has delayed reactions to things that bother him; that there’s a reason he does not want to relinquish his blue fleece coat on a warm day. But sometimes these are all forgotten in the heat of a moment and I feel I’m back at square one. Being Charlie’s mother has been all about learning to see who Charlie is; it’s been a continuing education.
And: It’s been great to be a mother—–to be Charlie’s mother. As Theresa Waldron writes in today’s Atlanta Journal-Constitution about how she feels after getting her 13-year-old year son, Kenneth, to bed,
“As I kissed his cheek and turned out the light, I breathed a sigh of relief. We made it relatively unscathed through yet another day, and my boy is happy.”
A very, very, very happy Mother’s Day to so many wonderful, tired, laundry-overwhelmed, and ever-loving mothers!
But I thought Lisa Ackerman’s friend Jenny had a son who was no longer autistic. Period. Isn’t that a “cure”? If not why not? It’s doublespeak. Years ago mercury mom (maybe former mercury mom) Dr. Amy Holmes said her son was practically cured, but it turns out that he remains seriously impaired and non-speaking, or mainly non-speaking, but it sounds like he’s happy.
Lisa Ackerman described her son as a “toxic train wreck”. Now I wonder if he’s a “toxic car accident”? Or if he’s a recovered “toxic plane crash” or a “nearly-recovered toxic sinking ship disaster”?
Neurodiversity is not just composed of people who say autism is just a difference. It’s also composed of people who say autism is a disability, and Julie Deardorf probably was not told by Lisa Ackerman that there are people who believe in the importance of diversity of all kinds, including the diversity of brain types, who are “low functioning” and that these people likewise do not want a “cure.”
Happy Mothers Day to you Kristina.
“…….like a car accident, where some individuals may die and some receive different wounds…….You can’t be cured, but you can recover through treatment and time to heal.”
An unfortunate comparison. The better comparison would be to compare stroke and autism. You can’t be cured of stroke, but you can recover through intensive treatment.
Many stroke patients meet diagnosic criteria for an ASD, impairment in social reciprocity, communication impairments and repetitive behaviors.
The proven therapies in both conditions are similar, physical therapy, occupational therapy, speech and language therapy and a host of less proven holistic therapies.
Outcomes are quite similar with 20% of both groups having a good to normal outcome with intensive early therapy.
My mother suffered a stroke a dozen years ago, the prognosis early on was grim. I was involved in her therapy and was struck by the similarities of treatments she received and the interventions my daughter (PDD/NOS in 1987) were given.
In my mothers case after several months of intense therapy she ‘recovered’ to the point where she returned to live on her own and lived another 12 years independantly with no signs of any brain injury.
My daughter also recovered, losing her PDD/NOS diagnosis within four years, she mainstreamed and went on to gradute from college magna cum laude with a degree in communication arts. She has a job, lives on her own and has a boy friend who my wife and I like very much.
Both of these conditions involve brain injury, with ASD’s involving a disruption of early brain development (see dozens of published autopsy studies) and stroke involving destruction of the fully formed human brain.
To say that recovery cannot take eplace in ASD’s is fiction.
Some of this stuff reads like it’s out of the Middle Ages: “My greatest fear is that the fairies will come into my house and steal my son.”
Thanks for the link to the Robert Hughes piece. It looks like a good read.
Happy Mother’s Day. Kristina. And thank you for sharing your daily journey with us.
I think both of the pieces slightly missed the mark, although the Hughes piece was better than the Deardorff, which I thought was a pastiche.
Perhaps with good intentions I felt that both emphasized the “otherness” and the bleaker aspects of people with autism, esp. those who present as being less functional. I thought the articles were more about us “normals” and what our children do to, and, possibly, for us, as if they are plot devices for some kind of movie or novel of our lives, with the emphasis in the first person.
Everyone changes when faced with a circumstance that may be different than expected, difficult, uncomfortable and possibly uncontrollable (alcoholism, mental illness in the family, decline of a parent or family member from a progressive illness, other disability, circumstantial incident). I’m just not sure that I would like to see Eleanor as a supporting actor or of some lesson or epic for me; my “me” movie.
I will reread the articles, especially the Hughes, but I still feel that there is something missing.
Happy Mothers Day.
Happy Mother’s Day, Kristina!
Am I the only one who thinks it odd that the Tribune would pick Mother’s Day to do an article on being a father?
Joe
Happy Mother’s Day every one!
The stroke analogy is quite meaningful, I think, but a caution: the spectrum is so wide and so little is really understood about the brain that it would be a shame if people felt, well, the kid would have been OK if only his parents had gotten him the right treatment early enough.
Therapy helps–no doubt about it–and the younger the better. But just as the damage from stroke is sometimes permanent, some ASD brains may never “recover”. We have to be ready and accepting of that.
(Joe, I agree with you. Maybe the Trib’ll have a mom write on Father’s Day!)
@Joe,
yes, i found the Chicago Tribune’s choice of topic “off-holiday”—-almost had to check to make sure it wasn’t Jim’s (and your) day.
@RAJ,
Sounds like your daughter is doing fabulous.
I’ve stated to meet some college-age students who’ve noted they “lost” the diagnosis they had in childhood. In some cases, they have chosen to self-identify as being on the spectrum. (I’ll leave it at that, as I don’t want to speak for someone else.)
Happy Mother’s Day to all!
Oh, and, yes, I do think this was an odd choice; writing from the perspective of a father on Mother’s Day is odd enough, stranger considering it seems that mothers tend to get the most personally mentioned/attacked in relation to autism. Not that the perspective of the father isn’t important, but it does seem like two very odd strikes in relation to timing.
I do have to note, RAJ, that I personally don’t find the stroke analogy functional either. In so far as the connections are different, yes. But I’ve also found that often it’s presumptuous; when it’s wired differently, it’s “broken”. When there’s less development, it’s damaged. When there’s more, it’s overdeveloped. It’s actually a subjective perspective based on a norm, even as it exists in physical nature.
I love the bit about “loss of identity” bit, though. It honestly was something I learned of at thirteen. After I was getting a solid 3.8 in a competitive middle school. It would have been so very continent (and I was aware of this) to slip into the “damaged person” scenario (heck, I’d used it for 7 years), and then to utilize it for all it’s worth. Heck, I could have written an award winning book about how wonderful I was as a recovered person and how grateful I was. It would have sold a killing more than a neurodiversity perspective, to be sure.
And yet it didn’t even make sense, because what it essentially was describing in my personality is basically what also made me a far more intellectually capable individual. Of course, it involved reading the more general jist of the person being described in the DSM, but what was there was describing someone who really was more complicated than that “damaged” individual described, and it would have been flat contradictory to look at the effects of one side of that aspect without accepting the other.
So, honestly, the neurodiversity perspective I have isn’t something because I’m resistant to changes in my identity, it’s because I thought through the new information about my life at the expense of that very same rigidity.
Also, I wouldn’t, at the end of the day, accept the definition of autism as “impairment in social reciprocity, communication impairments and repetitive behaviors”, because that’s, for me, a category error. They’re things that come from autism, but they aren’t autism. If I was to analogize, the argument could be used to say that alcoholism is sociality, because sociality can lead (not necessarily) to alcoholism.
Cliff
Err… when that post clears moderation, “continent” should be “convenient”. Too much typing today, going a little too fast!
Cliff
Here’s to motherhood. Happy Mother’s Day Dr. Chew…
Ditto, Kristina. Hugs to you and yours from Denver! K.
RAJ,
Something seems a bit unreal from your story. You said your daughter was diagnosed as having PDD-NOS in 1987? It was almost a decade later in 1994 that PDD-NOS was added to the DSM-IV if I’m not mistaken. Based on the rather ignorance that still exists today in both the psychiatric and medical fields when it comes to diagnosing autism at an early age, it seems almost mystical to me that you had a daughter diagnosed 21 years ago as PDD-NOS when it wouldn’t be included as a diagnosis for another 7 years. Now she is doing great by your measures some 20 years on (and “recovered”) and your still lurking about the internet on autism issues?
Can you tell everyone who was diagnosing PDD-NOS in 1987, a full 7 years before it was included in the DSM?
Great piece. I’m definitely with Hughes.
It seems to me that the ‘negatives’ take prominence in the press rather than the hic-cups, giggles and triumphs, which is a great shame as the picture is just too one sided.
Happy Mother’s Day.
Best wishes
Actually, I think PDD-NOS was added in 1987. So it would have been the same year it was included.
Cliff
Cliff,
This is from Roy Grinker’s book (I admit I’m not an expert but will defer to Dr. Grinker on this). According to Dr. Grinker, Infantile Autism was changed to Autistic Disorder in 1987, but it appears that PDD-NOS was added in 1994.
The DSM-III
In 1980, the DSM-III was released and we finally see the inclusion of autism as a separate diagnostic category. At this point, there was only one autism designation and it was entitled infantile autism. There were only six characteristics listed and each of these six symptoms must be present in order for an individual to be diagnosed with infantile autism. Due to some controversy surrounding the descriptor infantile, this category was changed to autistic disorder in 1987.
The DSM-IV
The most recent complete release of the DSM, the DSM-IV, occurred in 1994. At this point, the category of pervasive developmental disorders and several subtypes were added. In addition to autistic disorder, a diagnosis could be made under the categories of Asperger’s Disorder, Rett’s Disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS).
It would have been introduced into the DSM-III-R, released in 1987. I think that actually is the case. But I don’t have that document on me right now…
Cliff
Hehe, I seem to be hitting the moderation concern button a lot now. Maybe it has something to do with the school library?
Cliff
I think PDD-NOS was a diagnosis at that time. My partner was semi-formally diagnosed as such around that time, at about the age 2-4. His parents and the professionals he worked with seemed to think he “lost” the dx within a few years after that. Of course, he was diagnosed with Asperger’s at age 21, so the whole notion of “recovery” is pretty questionable. I don’t think “recovery” can be properly measured through college degrees and jobs, etc.
I’ll take your word for it. Still, hard to imagine that there were a lot of trained clinicians out there that could diagnose it the same year it may have been included in a revised edition. Wonder why Grinker left that out?
Ok, here we are.
“In DSM-II-R, the term pervasive developmental disorders was retained to describe the overarching diagnostic class to which autism was assigned. The more problematic diagnostic concepts, e.g. childhood onset PDD and residual autism, were eliminated. The DSM-II-R definition was specifically designed to be more developmentally oriented and to be appropriate to the entire range of syndrome expression over both age and developmental level. This was reflected in the new name ‘autistic disorder’ rather than the DSM-III term ‘infantile autism’. DSM-II-R included more criteria and a polythetic definition; because of various concerns, age of onset was not included as an essential diagnostic feature although age of onset could be specified. Criteria in the DSM-II-R were arranged developmentally and grouped into three broad categories relating to: (1) social development, (2) communication and play, and (3) restricted activities and interests. This last category reflects the earlier concept of ‘insistence on sameness’ included in previous diagnostic schemes, e.g. Rutter (1978). For a diagnosis of autism, an individual was required to exhibit at least eight of sixteen criteria with at least two from the social and one from the two remaining groups. In DSM-II-R, only autism and the ’subthreshold’ category PDD-NOS were included in the PDD class”
-”Autism and Pervasive Developmental Disorders”, Volkmar, Fred R., 1998, Cambridge University Press
Ok, so here’s the catch. The PDD-NOS category here isn’t actually the PDD-NOS category added in 1994. The reason is because the category had to be changed when they readded the aspect of the onset being related, and so it’s effectively, being defined by various things outside of the autism categories previously stated, and so it’s a more broad category encompassing differences based on onset and not encompassing the differences that would be added later like in Rett’s or Asperger’s.
Cliff
If you go to the website for Dr. Grinker’s book, Unstrange Minds, there’s a page that shows how Pervasive Developmental Disorder changes through the years in the DSM.
PDDs were not part of the DSM till 1980 (in DSM-III).
In DSM-III-R (1987), Pervasive Developmental Disorder Not Otherwise Specified is added.
With DSM-IV in 1994, it’s Pervasive Developmental Disorders.
With DSM-IV-R in 2000, there’s Pervasive Developmental Disorders [also called Autism Spectrum Disorders] and Pervasive Developmental Disorder Not Otherwise Specified (including Atypical Autism).
Thanks Cliff and Kristina. I learned something new today. I must say that 87 DSM R description was a bit confusing to me.
This family has quadruplets and they are all on the spectrum. There is a story today about them and it continues for two more days:
Autistic quadruplets and their parents work to overcome problems
ABOUT THE SERIES
TODAY: The Mann boys are diagnosed with autism and the family researches therapy to find the best treatment.
MONDAY: Teachers and therapists say early intervention has helped the boys adjust to school.
TUESDAY: The Manns ensure the boys get to interact with other children in sports and other activities outside the home.
http://chronicle.augusta.com/stories/051108/met_198423.shtml
Oh and at the front page of the website it states this:
Vaccine connection?
Vaccine case draws attention to autism
http://chronicle.augusta.com/stories/051108/met_198426.shtml
You can leave comments on the stories too
FYI – I just posted two links to stories in the Augusta, GA paper today on a family with quadruplets that are on the spectrum and then they did a vaccine story as well.
I just realized that Robert Walker is the one who wrote the book Running With Walker. I thought the book was very good and never did get around to writing a review on it.
I will have to include the link to his article on my Fathers day article.
I made an error in his name, it is Robert Hughes and his son is Walker, not the last name.
Thanks for the link to the DSM reference. I saves it.
Happy Mother’s Day.
cs impugned:
“Something seems a bit unreal from your story. You said your daughter was diagnosed as having PDD-NOS in 1987? It was almost a decade later in 1994 that PDD-NOS was added to the DSM-IV if I’m not mistaken. Based on the rather ignorance that still exists today in both the psychiatric and medical fields when it comes to diagnosing autism at an early age, it seems almost mystical to me that you had a daughter diagnosed 21 years ago as PDD-NOS when it wouldn’t be included as a diagnosis for another 7 years. Now she is doing great by your measures some 20 years on (and “recovered”) and your still lurking about the internet on autism issues”?
http://www.unstrange.com/pdd.html
PDD/NOS was introduced in DSM-III (1987).
Lurking around the internet? I have been interested in autism science since my daughter was diagnosed in 1987 and have been a contributor to the peer reviewed Journal of Autism and Developmental Disorders between 1990 and 1995 when my daughter’s diagnosis was removed and I did lose interest for a decade even unsubcribing to the JADD.
In the last several years, due to a corporate takeover and forced early retirement I renewed an interest in autism research and hope to complete and submit a series of papers by the end of this year, all having to do with the myths surrounding autism from the myth of the autism epidemic to understanin how gene-environment interactions work and how twin studies have been misinterpreted for twenty years.
Hope I cleared up your rather puzzling jab.
@RAJ,
yes, that’s the same site I referred to thanks. look forward to reading your research.
Thanks Sarah for sharing about your partner. That is interesting to know he go the AS dx at 21. I think you are onto something there about recovery being questionable.
I would like to hear about social skills on those who “recover” when they hit middle and high school.
Amen to “recovery” being defined in terms of social status and degrees: it absolutely shouldn’t be. It certainly doesn’t help make life easy, be honest.
Honestly, I myself would like to hear from somebody who “recovered” in middle school age, or for that matter at any age. I don’t know that many other “recovered” individuals, and none personally at all.
Cliff
Regarding “recovery”: here’s a paraphrased summary of what I kept hearing while growing up:
“Oh no! Something’s wrong with Anne! She acts funny and doesn’t play well with others.”
“Oh wait a minute, she seems to be doing okay now.”
“Oh no! She’s having issues again!”
“Oh wait a minute, she’s doing a bit better.”
“Oh no! Hasn’t she learned [X] yet? Everyone her age is supposed to know [X]!”
“Oh, wait a minute, she’s good at [Y], so she obviously just needs to develop a bit more self-discipline and flexibility.”
(lather, rinse, repeat).
I don’t actually even know whether I had any “official” diagnoses of anything in early childhood — from the looks of the records I’ve been able to find, it is clear that people had “concerns about [my] social/emotional development” to the extent that I was placed in special ed for preschool, and I’ve come across various bits of paper indicating that meetings were held before my school year for at least a few grades to determine whether I needed an IEP.
I also remember people pointing out various things to me and expressing concern/annoyance about them: things like “getting too obsessed with one subject”, behaving in an “irritable” manner, apparently over or under-reacting to things in the environment, wearing headphones all the time when I could get away with it, saying “inappropriate” things to people, approaching strangers too readily, (later on) not approaching anyone in an attempt to establish friendship…the list just goes on and on.
So, even though I was a “late diagnosis” (dxed with PDD-NOS and then Asperger’s just a few years ago, when I was already in my 20s, though I’d had an ADHD DX as a teenager), my history “reads” very much like that of many, many people I know of who were actually diagnosed on the autistic spectrum in early childhood.
Specifically, I remember feeling very much like I was supposed to be one kind of person but not being able to live up to the expectations associated with being that kind of person consistently, and consequently feeling really horrible and ashamed of myself throughout a large chunk of my childhood and adolescence.
I also remember being “afraid of myself” a lot — I would find myself doing things like playing with my hair in odd ways, or making certain hand-flicky motions (I remember a teacher telling me I was going to “hurt my wrist if I didn’t stop”), or not being able to resist adjusting various bits of my clothing to get more comfortable, etc.
And since I didn’t have any context for these things (knowing nothing at the time about autism or even sensory overload for that matter), I took them to mean that there must be something really awful and scary about me. What’s more, I was convinced that it was somehow all my fault, for not having good enough “self control”; I also thought, after hearing some random psychological theory floating around, that I was probably “trying to sabotage my own success” on some subconscious level, though I couldn’t figure out the reason for this.
Altogether, it felt a lot like constantly being in a room where there was a mirror with a monster in it, and being told repeatedly that I was ruining all my chances at being the fairy princess I was “supposed” to be by putting on the trappings of monsterhood. Only in actuality, I was never a fairy princess to begin with, nor did I somehow “become” one whenever I seemed to be doing well.
And, as a post-script: I am definitely feeling much less randomly ashamed these days, and in a lot of ways, letting go of the shame has been instrumental in my learning to become more functional.
But oddly enough, part of me still feels like maybe I’m “supposed” to be ashamed, and I am still reticent to talk about my being autistic in certain settings and with certain people because I just don’t want to hear the whole, “Well, maybe if you’d never found out you were autistic, you’d be more motivated to try harder at being a normal person”.
(An old psychiatrist did actually try to do something like that to me, and I can think of few things more potentially destructive than telling someone who is finally coming to understand herself a lot better what amounts to, “Hey, well, you know back when you weren’t sleeping or eating and practically digesting your internal organs? I’d really like to see you get back into that frame of mind again, because only by running yourself into the ground and refusing to acknowledge anything about bodily signals or how your brain actually works can you achieve the coveted Most High Functioning status.”)
@Bonnie, yes, robert hughes—-I think he had another piece last year or so in the Tribune about his son reaching adulthood, and the sound of certain videos still playing.
Regan noted the “otherness” in the piece by Hughes and it’s something I’ve become, or tried to be, very conscious of in my own writing about Charlie. I think some “othering” is inevitable—Charlie’s Charlie, and I am me, and his mother—-but it makes a difference to be aware of this. I think.
In distinction is identity; it’s not in and of itself an evil. But it is important to be careful in looking at what the differences are, and what they really mean. I might say more about that outside cryptic terms, but it was just today that I wrote this awesomely boring paper about judgmental traits of perception, and I really don’t want to revisit that even on more interesting terms for a bit! So… I won’t.
Cliff
And at what we think about “difference” in the process……
Another “recovery story of two brothers, also by Deardorff. Recovery seems to be defined as:
Ooooh… if that sounds anything like my story, that’s going to bite them back really badly. Just ask Dad. Or me, as well. But from a parental perspective, that eventually came back with a vengeance. The expectation is pretty much that of denial; the stakes are too high; there’s either going to be some very clearly forced self-denial or a full knock-down-drag-out fight with those who are holding onto that normal conception. Given my comments here and elsewhere, you could reasonably guess what happened in my case.
Cliff
Happy Mother’s Day Kristina. You are an inspiring mother to me. I think we are doing our best and we take it a day at a time. I know I don’t know all the answers and that is okay.
Long term studies have been completed on children with a PDD diagnosis. Rutter’s group, who has the largest patient population in England did a systematic study on long term outcomes of their patient population with IQ’s > 50. 12% had ‘very good’ outcomes.
http://www.ncbi.nlm.nih.gov/pubmed/14982237
Outcomes are generally associated with IQ at an early age. Stell Chess, the reseacher who identified the ‘rubella autism’ patients also did a followup of her ‘autistic patients’ decades later and also noted that the autistic type behaviors tended to fade leading to recovery.
http://www.springerlink.com/content/x1xq336510810m61/
Heh, I have to admit that the loaded assumptions in both of those studies would involve going so far backwards in that regard as to what was “recovered”, what was “normal”, and what was “different” is so far. Unless you can produce a study which can show, distinctly, that the very mode of thought which is so central to autism was changed through the specific period of time, I simply do not have the time right now (it is finals period, after all) to go back and do a full reconstruction of the societal assumptions of behavior as related to “recovery” values and the self-fulfilling prophecies (especially related to using an IQ test based on communicated intelligence to later determine how much more one could communicate intelligence as mediated by the receptiveness of sociality). As somebody who has a “mentally retarded” IQ, I’d note that the societal constructs regarding how autism is tied to the negative behaviors ignores the general autistic substructure that is underlying the diagnostic criteria in its latent structure.
Cliff
Good grief (relief). I must say it is refreshing to read another AS person say they test out as mentally retarded on the IQ. I too have a very low IQ by standard measures. Thank god IQ was never used to disqualify me from attending a university. We need to get rid of that measurement in public schools. These tests are simply not accurate when used with autistics, and probably not accurate with anyone else either. I was assigned an aide in elementary school because of my behavior and testing scores and she never did a thing for me. The only thing I remember about her is when she called me a retard to the teacher in 1st grade after I refused to cooperate on a cut and paste assignment. To this day, I can still remember over- hearing her say to the teacher “What can you expect? He’s retarded.”
At this point, I don’t actually test at mentally retarded, but at various points in time I did. I managed to learn (through a lot of work on my part) some of the methods that one can use on that test, but it was a long journey to that. And, really, it’s just an awful measure, especially on autistics. I mean, it doesn’t even have fully accepted use between genders, less than when talking about some fundamental differences in communication.
I wonder how people would think of me now, writing like this, when I scored so on those tests. It’d probably be an interesting reaction to see.
Cliff