Friday, January 28, 2011

Proposed Revisions to Autism Diagnosis in DSM-V: My Response

The nice people at the American Psychiatric Association are cooking up a brand-new Big Book o' Crazy! I wrote about the Big Book o' Crazy once before, for ADHD Awareness Week.  I wrote about how no one in in our house had ADHD that I knew of.

BAHAHAHAHAHAHAHAHA!  Oh, my.  Now I know differently, don't I?  Sigh ... good times.
The new Diagnostic and Statistical Manual of Mental Disorders, version 5 (DSM-V) isn't due out until 2013, but that doesn't need to stop us from poking through their proposed revisions.

The proposed revisions to the autism diagnosis were revised this week, so I thought it might be helpful to take a look, and see how these criteria translate into real life with my son, who is currently diagnosed with Asperger Syndrome, a neurological disorder on the autism spectrum.

First, let's point out a couple things: The DSM is a manual of "Mental Disorders" and is produced by a group experts in the field of mental health, not the field of neurology. Autism is currently defined as a set of behaviors, as opposed to "etiology," or identified medical cause. (Translation: We don't know what the hell causes it, but, like porn, we know it when we see it.)

Why do I care how they define it? Partly because while I get that my anxiety and depression are mental disorders, I don't think my son's autism is a mental disorder.  I believe, that in his case, it's a genetic condition.  The other reason is that classifying it as a psychiatric disorder makes it entirely less likely that insurance companies are going to pay for services, as the lack of parity in mental health coverage in this country is obscene.

Another thing you might want to know: The DSM-V proposes Severity Levels of autism, based on how much support a person needs. I'm not sure how this is going to play out in real life, because the levels are "Requiring Support," "Requiring Substantial Support," and "Requiring Very Substantial Support."

What. The Hell. Is "Very Substantial"?

While the APA looks for a thesaurus, let's look some more at the actual proposed revisions, shall we?

The proposed revision eliminates Rett's Disorder completely.  Not that Rett's no longer exists, it's just that it's got a medical cause, and therefor not a mental disorder.  I hope that means that people with Rett's get more insurance support, not less. 

The DSM-V folds autism, Asperger Syndrom, PDD-NOS (Pervasive Development Disorder - Not Otherwise Specified) and Childhood Disintegrative Disorder all under the umbrella of Autistic Disorder or Autism Spectrum Disorder.  It removes speech delay as a must-have for diagnosis, but throws in sensory issues as a possibility.

Still with me?  Here's the proposed criteria for Autism Spectrum Disorder, and how it applies in our case.  The APA's criteria is in blue.  My response is in black.

Autism Spectrum Disorder:  Must meet criteria A, B, C, and D:

A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all three of the following:

1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

So, what this means for us is that we had to teach Little Dude to show concern if someone is hurt.  It was not an innate skill that he had.  Now he knows to go give the person a hug.  On the other hand, if he accidentally hurts someone, his response is over the top.  He melts down, shuts down, and it takes forever to get him back from that place.  So "abnormal" here could be read as "inability to regulate."

Little Dude does understand and use facial expressions, but often his expression is just blank.  It's interesting, because people often ask me, "what's wrong?" when nothing is wrong: it's just that I'm not smiling.  It makes me feel like people expect me to walk around grinning at nothing, just to reassure them that nothing is wrong.  And that right there?  Is one of my little specks of autism.

2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

Little Dude definitely avoids eye contact with strangers, but really, do I want him making eye contact with Uncle Creepy while we wait for our Happy Meal?  Not so much.  Generally I find this trait to be a total win. He can make eye contact when he feels safe.

3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people

First off, props to the APA for pointing out that autistic children might be totally fine and dandy while they're with their primary caregivers.  How this applies in our case: Little Dude is totally fine playing by himself.  Generally speaking, he prefers it, because other people mess up his Legos and that pisses him off.

B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:

1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).

Little Dude flaps when he's happy or excited.  Because he's super-happy on Fridays, we call it "Flappy Friday."  I'm not exactly sure what "repetitive use of objects" means.  Does it mean "hyperfocus on tiny Star Wars minifigures, turning them over and over while making little noises and holding your breath?"  If so, then: check.

2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).

Yeah, we've got these all covered.  You might think, hey, don't all little kids pretty much eat the same thing every day?  Yes, they do.  However, most little kids don't go completely bonkers if they accidentally eat their sandwich sections in the wrong order.

Also, is motoric even a real word?  I was an English major and I had to look it up.  The medical definition is muscular movement.  Thanks for keeping things clear, APA.

3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

You mean it's not normal for a four year old to live and breathe Lego Star Wars?  Hmm.  Okay then: check.  But also, meh.  It's normal for him, and he rocks at Lego Star Wars on the Wii.  Some day he's going to be amazing at what he does, so this is another one of those autism traits that's a big fat win in my book.

4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

This one is interesting to me because all four of my kids have had sensory issues.  However, the girls all "outgrew" most of their sensory issues with the help of intensive occupational therapy.  Little Dude has improved greatly in this area, but his sensory issues are still significant. 

You know how you know your kid's sensory issues are a problem?  When it impacts your entire family.  If everyone in your family panics when you hear a baby cry in a store because you know it's going to set off a freak-out meltdown in your child, it's time for an evaluation.

C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

Okay.

D. Symptoms together limit and impair everyday functioning.

Yeah.  This one's going to be a fine line, isn't it?  Especially because as parents of spectrum-y kids, we find that we structure everything in our children's lives so that their stress is minimized.  What you'll want to point out, and document if possible, is how these "symptoms," or differences, affect your child outside the home, and specifically at school.  Because that's the crux of the matter, really, when it comes to getting your child the services that will make life a little less stressful for him or her.

I think the point is that there are a ton of spectrum-y people walking around, with bits and specks of autism, who are getting through the day.  I know plenty of people that are somewhere on the spectrum, they just don't necessarily need intervention.  The APA is looking to diagnose people who need support, after all, not just people who are quirky or socially awkward.

Severity

Then there's the Severity Levels.  It's going to take a really experienced clinician to make these judgment calls, and we have a serious lack of experienced clinicians.  That's why it takes up to a year to get an appointment with a autism specialist at the best children's hospitals. 

I get that the goal here is to quantify things, and eliminate the vagueness of labels like "High-Functioning Autism," which isn't a real diagnosis.  However, these levels seem a little arbitrary and subject to opinion, which makes me nervous.  I don't know how these levels are going to affect the services kids get.  If my son "graduates" from Level 2 to Level 1, does he lose occupational therapy?  If he does well in Level 1, is he penalized by losing services?


You can see the original DSM-IV Criteria, the proposed revisions, rationale, and severity levels at the American Psychiatric Association's DSM-V Development website.

33 comments:

  1. Thank you for this post. I don't like that all the things you've talked about sound eerily similar to my son, yet, I also don't want to not get him a diagnosis if that's what's best for him. *sigh* Wish I had someone knowledgeable to talk to about this who won't assume he's fine b/c he's really smart.

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  2. Thanks for this post. The severity levels are...a joke!

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  3. Repetitive use of objects- in the case of one of my little friends at school it means hitting the same dang button on the same dang toy over and over and over and over and over etc. 'red-re-re-re-red-red-r-r-re-re-red-red-red-r-r-r-r-re-re-etc.' SOOOOO fun...

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  4. Wow...I'm an RN & some of this is baffling to me! I truly hope the changes don't affect Little Dude's insurance provisions. As always, thanks for the humor!!

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  5. I am hoping that there would be some level of developmental testing which could weed out what was within normal limits and beyond normal limits. My child has been through the developmental testing, and while the report that came back was in my opinion CRAP, the one behavior I would agree with it was able to define. I would definitely say that it comes down to knowing your child's psychologist (in our case I should have demanded screening first) and clarifying feedback received, advocating against anything you don't agree with.

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  6. It is a fine line that a parent of a Special Needs child walks. In order to have the services provided for our children at their public school, it is necessary to have our child’s quirks and behaviors identified. Next, the label and Individualized Education Plan (IEP) that follows them through their entire school career. As Monk says, “It is a blessing….and a curse.”
    As a Teaching Assistant (TA) with Special Needs students, I can honestly say I love working with the students. Being “Highly qualified” is a requirement per many states to be certified to do this job. Yet, each state can determine its own definition of this requirement
    My biggest concern with changes in the levels of support needed and terminology is that there has to be an acceptance of them by all of the entities involved. The idea should be to have a standard used by all concerned. The ambiguity of the language used in the APA document is too objective as you so clearly pointed out.
    Given their definitions, even typical students, especially hormonal adolescents, might just find themselves “in need of assistance.” When it comes right down to it, parents, public schools and all of the other agencies involved needs to be on the same page when it comes to what is best for our kids. Each one brings invaluable information about the child to the table, often just one piece of the puzzle. For the APA to propose changes does nothing except confuse the players.

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  7. Super fascinating post.
    I think it is a slippery slope to quantify the "support" in the way that they have. It's almost like they're trying to put additional labels to quantify almost like they do with an MR/DD diagnosis, except that there's not a valid and reliable assessment (like an IQ test) to differentiate. I completely get your fear about a kid being "penalized" if they do so well they're able to "change levels." With MR/DD there's usually no changing so the level of services pretty much remains the same no matter what.

    I work in mental health (in the state system) so the revisions are so interesting to me and I like reading the DSM because I'm a SUPER DORK, but I also like your take on it. ASD doesn't really seem to fit into psych at all and I know that there are individuals who fall between the cracks because the Dept. of Mental Health doesn't really "treat" ASD as a psych disorder, but the individuals with ASD aren't always appropriate for the services offered by the Division of Developmental Disabilities (which is a Catch-22 - they need services, but function "too well" to qualify for them).

    I know the state I work in is pushing for individuals with Autism to have their own umbrella of services to fit under. Yet, they're also facing lots of budget problems and layoffs. It's a tough world. Thanks for spreading the knowledge as much as you can. Hopefully some day SOMEONE will "get it."

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  9. For a kid like my younger one, it's a no brainer. He falls into the categories quite neatly. No changes expected. It's the kids on the other end of the spectrum, the ones on the fence, the ones without profound impairment but still require support, that I worry about. I've got one of each. I know where my kid came from and how hard he worked (and how hard WE worked). I'm worried kids like him will be left out in the dust.

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  10. I'm with you and the Domestic Goddess. The severity part is the kicker for me. Right now, my son falls in the Level 1 category, but at diagnosis, he was at level 2 (if I'm reading this right). So what does that mean? Hurray for intervention and services, of course, but what will the school/insurance companies say? Can they take away a diagnosis?

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  11. You have an excellent point-- if things are significant enough to warrant support/therapy and that therapy is effective enough to knock you down a diagnostic peg, then do the very same therapies get pulled or reduced? Totally different dx but amy silverman/girl in a party hat is dealing w/same thing obtaining services.

    [also, btw, adore you & am delurking today]

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  12. I am so vehemently with you on this, that I'm about to have T shirts made.

    My son does not have a mental disorder. He may be different than your typical kid, but he DOES NOT have a mental disorder.

    Getting all pissed off again, like I was last week, and the week before.

    This is da bomb of posts on the DSM code change.

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  13. This is interesting. My son has a provisional diagnosis of PDD-NOS. If these proposed changes take place, he probably would not qualify for an ASD diagnosis. He is "on the fence" as Domestic Goddess described.

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  14. I a so glad you posted this. Next week, my son is going to undergo evaluation for both ADHD and Asperger's, because we know he has one of them, but we just aren't sure which one.

    I felt so guilty for a long time for not getting him evaluated sooner (he's going to be five on Sunday).

    People kept telling me he was weird, and I kept thinking "Uh, he's three. All three year olds would rather run around and make ambulance noises than sit still at the dinner table/church/snooty relative's house."

    Last Spring we were in a car accident and he started having nightmares every night, so we brough him to a therapist. She was the one who said he may have Asperger's. We know an Asperger's specialist who rolled his eyes and said "He does NOT have Asperger's, he's just an active kid who would rather play by himself. It's his personality."

    That's what I had been saying. Then preschool happened and when he got into the room with 15 other kids, he freaked out, and spent the whole time either fighting to get out the door, or curled up in a ball looking at and speaking to no one. This went on for several days, and finally the teachers had to ask me to remove him, because sometimes it took both teachers to get him back into the room (the third day there he figured out how to unlock the door).

    I have no idea what's up, I just know he's sweet, affectionate, has great manners, has more energy than a chipmunk on cocaine, hilarious, creative, and not much of a fan of kids his own age (littler and bigger kids are cool, though).

    SRMM, I'm going to print this out and bring it to the Doc's office when we go next week. First off, she will think your responses are hilarious. Second, it may help us figure out how best to educate my son (who is currently wearing his grizzly bear hat, Lightening McQueen underpants and nothing else. He requests that we refer to him as "Bear Sam" from now on).

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  15. When the DSM talks about "support," they're of course not referring to school support. At least where I live, a medical diagnosis of Asperger Syndrome does not necessarily mean the child will receive supports or services in school. The schools do their own testing. If the child's disability does not get in the way of his ability to access the curriculum, he may not be eligible for school services. This is where it gets difficult for parents, i.e., your child with AS gets good grades and is quiet and gets along OK in school, but you feel he's not making friends or not doing this or that to his full potential. People battle with the schools over this stuff all the time, and have been for years. The DSM has almost nothing to do with any of it. The schools are not beholden to the DSM.

    Health insurance is another story altogether, because in that case the diagnosis does matter. But we currently receive no insurance coverage for my son's AS, so I don't see how this new DSM will change that.

    The "levels" make sense to me and I think are a step in the right direction. Not that they won't disqualify some individuals from receiving services of some sort, but nothing's perfect. I'd just rather have levels than hear kids referred to as "low functioning" or "high functioning," both of which seem like insults.

    I think the DSM is using the word "supports" to avoid trying to single out each and every issue a child may or may not have. They are (I guess?) referring to how much assistance the child needs on a daily basis. Can he dress himself? Can he brush his own hair? Can he be left alone or does he need to be constantly supervised? Is your house still babyproofed even though your ASD child is 10? I've met kids with Asperger Syndrome who have friends, play sports, participate in Boy Scouts w/o a parent or aide present, (why do they need the diagnosis again??), etc. There is NO WAY IN HELL my son could do that. So I've had to tell people his AS is "severe," because they always assume he's just some quiet kid who sits in the corner playing chess by himself. He may well be someone like that as he grows and matures, but at this point he requires support bordering on substantial.

    I think the upside of this DSM is that some kids don't really need to be diagnosed with ASD, even if they have many of the symptoms. I know a zillion people who fit the profile but don't have the diagnosis, myself included. If your child is doing great in school and just struggles with itchy clothes and making friends, I'm not sure an autism diagnosis is going to be that big of a help. Your child will or will not receive services based on level of performance, not on medical diagnosis. I had someone say to me, "You're child has an IEP?! Then you're GOLDEN!" That's insulting, absurd, and way off base. Most IEPs aren't earth-shattering. The IEP is only as good as the school and the teachers implementing it. A kid with no IEP but in a great school with great, caring teachers could be getting more support than a kid with an IEP in a robotic school with lame, lazy teachers.

    Sigh. This is all very complicated. I could go on all day. So I'll just stop here.

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  16. "I think the DSM is using the word "supports" to avoid trying to single out each and every issue a child may or may not have. They are (I guess?) referring to how much assistance the child needs on a daily basis."

    THIS! I guess the alternative would be to use the same descriptors used by the Mental Retardation criteria: mild, moderate, and profound.

    Personally, I think Profoundly Autistic sounds pretty weird, but... lol Sort of like being mildly pregnant or profoundly pregnant.

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  17. SRMM, both your post and the comments from your readers are fantastic. I think the revisions are a step in the right direction, and nothing they decide will be perfect. However, I'm right with you that AS is not a "mental disorder," and it's insulting to imply that it is a transient psychological issue and therefore can be "cured" with the right therapies. My son isn't broken - he's fundamentally different psychologically, yes, but that difference stems from a physical cause (even if no one knows the exact trigger), not a psychological illness/aberration.

    The AS that makes my son have unique social difficulties also gives him unique insights into the world around him. He's an Alexander Graham Bell in search of his Thomas Watson - he's a detail man looking for help to implement his ideas.

    I do think the diagnostic severity levels should be spelled out in more detail - they're too vague to have any real-world application for educators, diagnosticians, service providers, or caregivers. And it's true: the DSM-IV criteria are not followed strictly by educators (they aren't required to, and they're right to stick to their "on the front lines" remediation of the aspects of an ASD diagnosis that affect education - that's their job). Psychologists/psychiatrists/behaviorists don't all follow the DSM-IV guidelines to the same degree either,leading to confusion and stress for parents/caregivers seeking services and insurance coverage. The guidelines need to be reasonably, clearly spelled out (yes, a new thesaurus for the APA might be a good idea!), and then widely accepted among professionals who are supposed to use it for making diagnoses.

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  18. What does "mental" even mean anymore? That's so old fashioned and should be thrown out with electro shock therapy and floating uteruses (I didn't say uteri because I am not a pretentious ass). Aren't most "mental" problems found to be chemical and of other such tangibilities these days? Do they call autism a "mental" problem just because they can't figure out what causes it? Does that mean every other disorder and disease without known cause should be classified as a "mental" problem too?
    We need more research findings on the link between ASD and inflammation of the central nervous system. If ASD as an autoimmune response could move beyond just theory, then ASD could no longer be classified as a mental problem. My mother has Multiple Sclerosis (inflammation of the central nervous system; autoimmune disorder) and her mother had rheumatoid arthritis (another autoimmune disorder) and now my daughter is diagnosed ASD. And yes, I am waiting with anticipation to find out what my inherited autoimmune disorder will be...but anyhow, my daughter has been this way since the womb! Everything about her to this day is consistent with how she behaved even on the first ultrasound at 12 weeks--NONSTOP movement and seeking out sensory input. She still has the same meltdowns she had at two days old when I called the nurses for help because I thought she was gagging herself to death. At 12 month check her ped suggested autism. I am 100% certain that my daughter as a fetus, newborn, baby and now 3 1/2 year old is NOT a "mental" case (and when I call her a nutcase it is meant with the utmost affection)! This is not to downplay the plight of the real "mental" cases out there, but for the sake of treatment, the shrinks absolutely must keep their mitts off of autism. Leave it to the neurologists.

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  19. Oh - so many directions I can go here....

    I think that the moniker "mental disorder" for Autism is ridiculous. This is neurology, plain and simple. "Mental disorder" implies a set of maladaptive behaviors exhibited in an individual due to mental trauma or experience - the best example I can come up with is PTSD, or a personality disorder such as Borderline, Or Narcissism. (Which is getting the boot in this edition of the DSM. It shouldn't, IMO.)

    If you were to look at what most people consider "typical" autism, there are other, physical traits as well - low muscle tone, motor planning difficulties, hyperacusis, etc. NEUROLOGY.

    So, I understand the purpose of a DSM - to help quantify these things for more than insurance purposes - but also, the way I see it - for human rights purposes. Our history of helping individuals among us who struggle with mental challenges and differences is, at best, piss-poor. You give people a name, a description, and you have a shot at giving those "normal" people some kind of understanding, and hopefully bridge the divide of empathy. You get people willing to help, treat, befriend, and dignify others whose brains won't let them plug into society in a traditional way.

    However, in the case of ASD, this is a medical issue, a genetic issue, a congenital issue - insurance companies who use the DSM to tailor their coverage around denying people could be getting a boost with this revision, especially when your child is on the "fringe" so to speak.

    You know, you have separate dental coverage, hearing aid coverage (just ask me about that one. Go ahead!), eye care coverage, mental health coverage -

    When did our heads stop being part of our bodies in the (uninsured) eyes of insurance companies?

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  20. I don't know what to make of this because this is all relatively new to me. My 4-1/2-year-old DS is undergoing a second opinion because the first opinion said no ASD, but I stil feel there is something going on.

    All I do know is that this stuff makes my head hurt. SRMM, at least you can make me laugh about it.

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  21. I totally agree with EVERYONE who says that ASD is NOT a mental health disorder. My depression, ptsd, and dissociative identity disorder (yup, I have multiple personalities) are ALL mental health issues, but my sons' and my autism? Nope. That's as neurological as my fibro and migraines! My kids aren't psych cases. Ok, my older one is, but he's been through hell in his 12 years, but his AUTISM isn't. I'm not making sense, am I? Urgh, stupid headaches.

    I guess I just wanted to jump on the bandwagon and say that I agree with you, SRMM. And to echo what kridors says when she says that psychs should keep their mitts off of the autism. Stick to the crazymaking stuff, and leave the neuro stuff to the neurologists.

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  22. Interesting point about it (not) being a mental disorder. I hadn't really thought about that aspect before. I will be thinking about it now!

    I've been reading everyone's posts about these proposed changes, and your is perhaps the most useful (and definitely most entertaining) one I've come across yet.

    My son has classic autism. Under the changes it looks like he'd be considered Level 3 at point of diagnosis two years ago, and would sit "low" in Level 2 now. So even though I know he'd still be considered autistic, I'm glad we won't get caught up in how the diagnostic criteria changes affect access to services; he's already qualified for and receives very good services. I don't envy parents who will be caught in the changes in a few years time, it's bad enough now with the "settled" criteria (which do clearly need clarification and improvement though).

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  23. I think it's idiotic that parents wouldn't get their kids tested. If you could be offered a "cheat sheet" to life about your child so they can grow up successful, wouldn't you want it? Because if YOU don't, they do.

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  24. So, I'm assuming the last anonymous post is about my first post - maybe I'm just sensitive but it doesn't really relate to anyone else. Apparently you misunderstand me. I would LOVE a "cheat sheet" for my son. But when we took him in to get him tested we were basically dismissed as ridiculous. B/c he passed some of the tests fine, they said we were just being over anxious. Well, great. I knew he didn't have full blown, needing major intervention autism. But there's a big space between non-verbal and neuro-typical that I think leaves room for other possibilities. I realize I'm not the expert, but when your son traces everything even remotely similar to lines, breaks down if you don't follow all his "rules" and has to wave and say good-bye in a specific manner or looses it at bedtime, in my book, there may be a problem. I just want to know what it is so I can help him. I don't like that a lot of things I read about other kid's with Asperger's sound eerily similar to my kid, yet he can't get a diagnosis. I just want to help him the best I can, armed with all the info I can but (feel like) b/c he's really really smart for a 3 year old they see that and dismiss him. So, I guess that wasn't as clear as it could've been with my first post. But now I hope I've cleared it up.

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  25. I'm a Marriage and Family Therapist with a son that had a very rare late onset of Childhood Disintegrative Disorder. I am so disgusted for all of us that keep getting slapped in the face. A few years ago, I heard the autism spectrum disorders were going to go in the medical books (where I believe they belong under Neurological Disorders). Then, not only does that not happen, "they" actually decide to lump all autisms together. I feel like it just continues the ignorance out there about our children. What if we decide to lump all depressive disorders or cancers together into one diagnosis. I thought as human beings we were suppose to evolve and become more knowledgeable. I think this new DSM autism category is so unethical. It's not really about one individual and whether they fit well into a category, rather the broader importance of awareness of the spectrum. Being in a field that has to utilize the DSM, it really sickens me. Thanks for your humorous insight. Cathy

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  26. This is an excellent post - just followed a link here from A&O. I honestly don't know why they didn't just change the category name from PDD to ASD and leave the rest of it alone.

    One thing that struck me is having to rule out global developmental delays, especially when the new criteria don't seem to allow for motor delays, only for repetitive behaviors and stuff like that. I'm glad they added sensory stuff but think motor delays should be acknowledged as well.

    In the long run, they are still trying to fit a neurological disorder into a mental health framework, as Cathy pointed out in the previous comment.

    BTW, I am reading this post thinking primarily of my son, who has an autism diagnosis and would probably have started out at a 2.5 and would now be a 1.5 on the severity scale.

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  27. I think you should have t-shirts made up especially for Fridays- HAPPY FLAPPY FRIDAY! :o)

    As a university instructor of special educators who plan on teaching children with autism- the most important bit of advice I always try to leave them with is this: Make sure you have a sense of humor and roll with the punches, if not- maybe not the right profession for you!

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  28. I couldn't agree with you more on "D". Twitter Twin One is a totally normal kid, who cooperates and is polite, and helpful and calm and all other things that make for a great child. Until he goes to school. or outside. or to pretty much anywhere loud, new, bright or smells funny. So whats expected then after the changes, we just don't let him ever walk out the front door??

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  29. I look at all this, and I think my 4yo qualifies. My 12yo, I'm not as sure. But the true problem is that it still affects my 12yo. This is the first year that he has realized that he has more than one friend. I've gotten the name of a psych that can evaluate him - but what will I do if he qualifies this year, but not next year? It is only recently that I've realized that he probably qualifies as Asperger's.

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  30. I actually don't mind the term mental disorder. All it really means is that it's a condition that affects the mind, and can only be diagnosed by looking at the mind (or the behaviors that result from how the mind works).

    There's a big difference between a diagnosis like Down Syndrome, where you know exactly what caused the condition, and a diagnosis like autism. Most likely autism will end up going the way that mental retardation has gone - roughly half of all kids who technically have mental retardation have far more specific, cause-related diagnoses like Down Syndrome, Fragile X Syndrome, FASD, etc. Currently the cause can only be found for a small minority of autistic kids. But it's pretty clear that autism is a bunch of different conditions, that simply result in similar behavioral characteristics. To me, that's what mental disorder means - a collection of cognitive/behavioral traits that we don't know the underlying cause of. (Which is why Rett Syndrome doesn't belong in the DSM any more than Down Syndrome does.)

    Actually, I do have one beef with the term 'mental disorder'. Not with the word 'mental', but with the word 'disorder'. My brain isn't a broken version of normal.

    ReplyDelete
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