Wednesday, April 04, 2007

How Do You Spell Despair?

Fathersvox and I are shell shocked right now. Well, let me speak for myself, as he and I haven't really spoken since we came home from seeing the psychologist who did Sweet M's ed-psych evaluation. So let's start this whole thing all over again . . .

I am shell shocked right now. Earlier today we had the meeting with the psychologist who did Sweet M's evaluation. He was concerned about "her disorganized thinking." That her language and communication disorder cannot fully account for what he called her "associative and psychotic-like thought processes." "Psychotic" is not a word that a mom wants to hear in the same sentence as her child's name. But since autism used to be considered "childhood schizophrenia," I forged forward with my questions.

I asked if he's saying she is psychotic. No, just that her thinking is disorganized in the same ways that thinking is disorganized in psychotic people. Does she have other symptoms of psychosis? No, he doesn't think she's delusional, or hearing voices, or schizophrenic, but that she is in her own world, and therefore oblivious to the logic of the world around her.

So I asked if he thought the autism Dx makes sense. Afterall, we've been warming up to the autism Dx for nearly two years.

No, he was emphatic, she's not autistic, he said. And it certainly wouldn't make sense as an educational category for her. She's not completely withdrawn, he said. She's interested in what's going on around her. She doesn't belong at the $72,000 school for ASD kids that you looked at, though they'd be happy to take your money, he said. Fathersvox quipped, Good luck to them if they can find our $72,000 because we can't.

At that point I was thinking, Geez, all the autistic kids I know and read about are interested in what's going on around them, and are engaged at some level with their families. I'm thinking, what sort of autistic kids do you know that are completely withdrawn. I don't know any autistic kids like that . . . I understand the idea that having an autism Dx in New York City isn't great because then you get an autism educational classification and they send your kid to an awful 6:1:1 with no academics. But come on — she's not withdrawn enough to be autistic, but her thought processes are psychotic-like? What's up with that?

No, he says, her problem isn't autism. It's more a psychiatric problem, he thinks. And then I am completely stupefied because I thought autism was a psychiatric diagnosis, as well as a neurobiological condition.

People, I gotta tell ya, over here at Autism's Edges my heart is breaking. Why can't anyone see the kid that is there? Why can't anyone help us with this — help us with her? How can this be so hard in the middle of the richest city in the richest country in the world, seeing the supposedly best of the best doctors? How can this be like this? And this guy is a good guy, a nice guy, a lovely person, and the head of child psychology at a huge and prestigious institution. And I feel confident that he has no idea how upsetting his lack of clarity was and is. And frankly, I wouldn't even begin to know how to tell him.

And then there is the matter of her academics: reading at a late first or early second grade level instead of a third grade level (her age group). He says she's so underperforming academically that she won't get into one of the two schools we've identified as possible placements.

I say that he probably can't have any idea how hard we have worked to get her reading to where it is now. I say I feel as though we've been scaling Mount Everest since the reading emergency of fall 2005, and now someone tells us that we're not even at the base camp. He nods sympathetically.

He mentions her throat clearing behavior and says he thinks it's probably a tic, and that we should see a neurologist. Of course, he says, then all you'd really have is another diagnosis, though some of the medications for tic-disorders might help with other things going on for her.

So he's saying that her problem is psychiatric, but that she probably needs to see a neurologist (We tell him that we've seen two, but still, he thinks it would be good for us to see another neurologist, even though one of the two we've seen is, he agrees, really excellent.)

And then, the piece de resistance. He asks about the possibility that she has sleep apnea -- because she has this gaggy throat thing that happens waking and sleeping -- and I mention that she has enuresis, but that her attention and school work got so much better when we let her have her nighttime diaper back. (For those of you who've been reading along here for a while, you'll remember this.) I mention that lately she's been getting ready to give up her nighttime diaper — that she says she's almost ready. And he says, well, she's nine years old, you should get rid of her diaper. You've gotta push her.

And I'm sitting here now, sitting here sort of shell shocked, and I'm just thinking — you don't get her, you don't get us, you don't get any of this. Remind me not to tell you anything about my kid, because you totally don't get it.

Then, of course, he also says, utterly contradictorily, and completely unpersuasively, you are doing exactly the right things for your daughter. She has a great psychiatrist. You're looking for a better school setting. You're doing all the right things. Except for those minor details that she's got psychotic thought structures, wets the bed because you're not pushing her enough on growing up, and has a gaggy throat clearing tic that you've not had treated. Apart from that, you're doing a great job. Really. No kidding. You folks are super.

In the cab coming back from the big midtown institute we are completely silent. Sweet M is with us, and we are all listening to the rain falling, the flip-flop of the windshield wipers, the splashing in the gutter. How low can water go? What happens to it on the way down? What does it take with it on its descent? And despair — how do you spell despair? I'm not sure but it begins with the same letter as diagnosis.

34 comments:

kristina said...

Back to negative square one----sorry that's not a very encouraging thing to say but I wanted to comment something---there will be more. Over the edge.....

Anonymous said...

I'm sorry. This is so sad. I agree this guy doesn't know Sweet M at all. I think maybe he couldn't give you any real advice and so grasped for whatever game to his head, "too old for pull-ups," "weird throat clearing must go...," "parents dropped the ball on that one..."

I hope you don't stay in despair, it was unfair what that doctor did to you.

That whole "withdrawn" thing is really stupid. You could ask him if he's ever heard of the term "active but odd," it's used by scientists to describe friendly outgoing autistics.


I wish you could see Elaine Tierney at Kennedy Krieger. I hear she's a really kind person who is tuned in to reality and sees the positive in autistic kids. I don't know if she'd help with a school placement, but I think you'd all feel better if you could see someone like that.

ballastexistenz said...

Stay. Away. From. That. Guy. And don't have the records transferred anywhere.

Anyone who thinks that an autistic person is "psychotic-like" because they're "not completely withdrawn" is to be avoided at all costs.

If you do not avoid this guy, then a few years down the road if she starts developing a strong interest in fantasy or something this guy might diagnose the same thing I got a diagnosis of at one point: "Psychotic since early childhood then later developed schizophrenia." My parents arguing that I had already been diagnosed as autistic was to no avail at that point, these people said this was, rather, "childhood psychosis" and I'm willing to bet they used "not completely withdrawn" in their arsenal of excuses.

Add to that the fact that he's getting on your case about the diapers and... please stay away from this guy, he sounds like the awful shrinks my parents unwittingly took me to at one point.

Anonymous said...

Kristina, I am thinking about how really hard it must have been to get get a straightforward autism diagnosis for Charlie early on. I am thinking about what you and Jim must have gone through in terms of recalibrating your lives. So I assume that you do a recalibration, and go through whatever mourning you go through, and you move forward . . . and do all the amazing things you've done. And every thing that Charlie gains is a plus. . . not that there aren't harder times and easier times, but you can see how far he's come and say, "We didn't know if he would speak, and now he can read."

In our edgy world of diagnostic ambiguity, the situation is more one of the death of thousand cuts. We continue to think of Sweet M in college, and he's talking about "adaptive life skills." We're thrilled that she's a year behind on reading because she's reading, and he's saying that she's just not cutting it.

I feel as thought it's a process of people whittling away at our dreams for her, and whittling away at our sense of accomplishment about what we've done for her, and what she's done in her own earnest and hardworking way.

And we all know that autism isn't a big ole tragedy, but having your sense of accomplishment (as parents) and your child's real accomplishments diminished . . . well, that is pretty damn discouraging.

It is over the edge. I am over the edge.

Anonymous said...

Thanks Ms. Clark and Ballastexistenz for your thinking about this . . . I think it will be important for me to put this in perspective.

He's spent a little less than half a day with her . . . And her thinking is disorganized. Anyone's would be if they couldn't hang on to the verbal information that's two utterances back.

It *is* a language processing issue, that, of course, has profound implications for thought processes. I will need to do some reading on thought disorders, but so far what I've read suggests that this is just another manifestation of the underlying verbal deficits.

The trouble is that I still have the feeling that we were blown out of the water . . . That he was oblivious to what is beguiling about Sweet M . . . That she was missing missing missing in all of this. . .

Mary said...

My heart is aching for you.

Have you read the Harry Potter series? As I read about your despair, I kept thinking about the Dementors from HP: "Get too near a Dementor and every good feeling, every happy memory will be sucked out of you." I think that as parents we need to work hard to recognize Dementors when they arrive in our child's lives, and then work hard to cut them out. Recognizing them can be hard, especially when they come disguised as good guys, nice guys, and lovely people. But a Dementor is a Dementor. Head for the hills.

You are not a parent who runs away from difficult information. You are not a parent who lives in denial. You are open to new thoughts, new perspectives, new information about Sweet M. Trust your instincts: if the child he's talking about doesn't sound like Sweet M, then she isn't.

ballastexistenz said...

Thought disorder is a word they use for someone who talks a certain way, it's diagnosed almost entirely on utterances . My spoken language frequently sounds like I have a "thought disorder" because I have expressive language trouble that is more prominent in spoken than written language (but not absent in written).

Read up here and tell me an autistic person who would not sometimes be considered to talk that way -- at least one of those ways.

And his things towards you...

They went from that with my parents to claiming my parents caused me to be the way I am (they called it psychotic, they meant autistic). They started looking for signs of "thought disorders" in my parents. They would get on my parents case for "loose associations" because my parents like wordplay and puns, and say that "schizophrenic traits run in families you know" to them. And they also eventually blamed my mother's parenting style and...

please stay away, don't give them credence, the guy is using the sort of language that is often used by people who take psychoanalytic-like stances on autism and that is a dangerous stance to take and very wedded to the childhood psychosis notion and a bunch of other disturbing notions.

Maddy said...

I can only speak for myself and I do not want to criticise.

I think that much depends upon your make up. For me, waiting for the evaluations was torture and when the diagnoses came it was terrible blow, but we had some 'definite,' which provided a plan or a map of where we should be heading.

For me, to be in your situation of nothing being definite would drive me to distraction. I am sincerely sad and sorry for this situation to be as it is for all your family.

I found that the negative things tended to stand out on flag poles and it took a while for other information to percolate through to me - I hope that further reading of the evaluation brings out some bright spots.

I hope, that this lack of clarity may mean that there are a whole wealth of possibilities for her.

Best wishes

Mat said...

If you throw in a commentary about already being schizophrenic, that sounds almost exactly like one of the first evaluations I got when I was young. And just about everyone now agrees that I'm autistic, but that stupid eval caused me so much mishegas when I was younger. And he also sounds like some of my shrinks who were more on the 'bad news' end of the spectrum (pun unintended).

I'd at very least get someone else to look at her.

Club 166 said...

Since when do tics disqualify you from being autistic? Buddy Boy has a couple of different tics. One of them is a throat clearing thing. Whether it's an autism related tic, or a co-diagnosis of Tourette's, who cares. Either way, it doesn't disqualify a diagnosis of autism.

And "not completely withdrawn" as a requirement for autism? Who does this guy think he is? Hasn't he read anything about how people who have seemed to be completely withdrawn all of a sudden were found to have taught themselves to read, and to be paying attention to the world around them?

Amanda's right. Get rid of him, and don't ever tell anyone you saw him. He doesn't know Sweet M., and doesn't appear to know much about autism, either.

Anne Corwin said...

I agree completely with those advising you to stay far, far away from this guy. The things he is saying are *dangerous* and this is exactly the kind of person that you want to keep an autistic kid out of range of.

VAB said...

Psychiatry does not even approach an exact science. Psychiatrists give opinions. They are educated guesses. If the opinion isn't useful -- if it does not help describe what you see going on, and it does not help to construct a useful plan of action going forward, you just have to drop it. We have dropped a psych-ed evaluation in the garbage before. It chewed us up at the time. It upset us and it was a waste of time and money but, looking back, it's a blip.

As for the reading levels, being one or two years behind in NYC in grade three just is not that big of a deal. Our guy repeated grade three in NYC for that reason (he got a 1 on his citywide ELA test). By grade 4 he was getting 3s. Lots of his friends did the same. If a kid with language issues is within a year or two of target, they are doing more than fine, and there is certainly no reason to throw up one's hands. I don't know where you were thinking of as placements, but it strikes me as odd to think that kind of reading delay would be an obstacle.

As for the enuresis -- big deal. Lots of kids older than nine have difficulty with that. It doesn't make sense to me to say "psychotic thought patterns" and then turn around and say "you've gotta push her." There just does not seem to be a coherent and cohesive understanding in that.

This is an awful evaluation, but it's one person's opinion based on a few hours of observation. The next one will be more useful.

Health Watch Center said...

Hello MothersVox,

I am very sorry about what you are going through now...Its very depressing situation...Where there is will there is a way...Don't get disappointed...You are doing great for sweet M...You will be a proud mother of sweet M...

Health Watch Center.
Self Hlep Zone

Anonymous said...

Delurking to say I'm sorry that you're having so much "aaaaarrrrrraaaaaggggghhhh."

I can't believe this guy and the tic thing. One of my NT sons has a tic, and our ped said it's beginning to be viewed as a normal developmental thing and not to worry about it 'til it had been around for two years or until it gave him trouble socially or academically (which it hasn't).

The mixed message you were given reminds me of one of our peds re: our son's nut allergies: "No, you don't need an epi-pen, but DO be careful, as these allergies can become more life-threatening as they get older." ?????????? Can these people hear themselves? Talk about disorganized thought processes....

ballastexistenz said...

Oh, yeah, and, regarding the tics, lots of autistic people have tics, lots of autistic people even have full-blown Tourette's, it doesn't mean we're not autistic.

Usethebrains Godgiveyou said...

He keeps his job by telling people their children are crazy...only he can "save" them ...

Lookie here... I've got some good stuff. The first psychiatrist we went to was killed by her son. I sh*t you not. The second was a drug dealer, and refused to do any counselling. The third was a beautiful man who suffered from severe ADHD himself. We went to him for 3 years until he moved at a cost of $160 dollars a pop, and it was worth it. He always calmed my fears, and told Ben he was the hardest worker he knew. We always went home happy. The next's first question was "Does he have any friends?" and I figured the guy was a loser and never went back. We don't see psychiatrists anymore...we go to a pediatrician who specializes in special needs. He's almost as cool as the ADHD guy. (If anyone is near Augusta, Georgia, I'll give you his name!)

Lastly, I have to tell you the story of a friend of mine. The school psychiatrist was a hero in her own mind. She wanted to label the kid "schizophrenic" because he talked in "at least two different voices". My son talked in different voices because he copied, word for word, inflection for inflection, the scripts he learned for language from t.v. !!!!! I imagine he would have been considered psychotic and schizophrenic, too.

Yipes...these people have their own agendas. I often think it is THEY who are "projecting" their illnesses on their clients!

Ms. M needs you to believe in her. Find a psychiatrist who believes in her, too.

KathyIggy said...

I wish you had better news (and a better school district to work with!) We have never gotten an official medical diagnosis for Meg, since the school has been good to work with. I know there's a place for Sweet M out there--she sounds so much like my Meg! We'll keep our fingers crossed this will continue to middle school. The school referred us in Kdg to a child disability clinic, but they totally disagreed with the evaluation (as did we) which found ADHD, anxiety and basically said we needed to not cater to her anxiety and for her to watch less TV and video games. Our case manager just laughed at that one and said she could tell after observing Meg for the first time in Kdg that she has ASD. So that's the classification on her IEP and our services have been good, with a few dips along the way. Meg is very interested in what's going on--she sees things through her own lens, though, which some may see as "odd" or "disorganized." And the language processing, anxiety, tics, all are part of who she is. None of them disqualify ASD. We've had hair pulling, face rubbing, chin licking, chewing clothes, and now hair twirling and repeating phrases to herself. I think it's all part of the package.

MothersVox said...

Thank you friends for your support and thinking about this. MOM-NOS, I saw the Harry Potter movie with the Dementors in it, and yes, this was a Dementor moment. Thanks for reminding me about them! It's true -- I felt as though I had been "demented".

The part that is so devastating about this is that this guy came so highly recommended from so many people that it makes us feel like we're somehow crazy. And the new report itself, as I'd written about before, is pretty neutral because it's vague.

You all know that last year we had a neuropsych done ($3500-ka-ching) that describes her as oppositional, and provides a new DX of Oppositional Defiant Disorder. And no school wants a kid with ODD, except maybe the Rotenberg Center, because for them it's an excuse to torture them.

Now we have a report that isn't idiotic about her behavior (because her behavior is basically fine now), but that is offbase about the etiology of her associative thinking.
We have this mysterious "disordered thinking" psychiatric direction. Slightly better than ODD, but marginally. The report itself is vague, but what is clear is that he would not back us up if we tried to get her a spot at the autism school that we liked (and had to sue to get funding). Another $3500K ka-ching and no closer to a placement for her.

I can't really do another round of testing -- we need to move forward with school applications -- and I'm sitting here with two equally expensive, equally useless reports, which are useless for different reasons.

Anybody have an extra $3-5K lying around that they'd like to kick-in so we can have her tested again? ;) [just kidding]

But truly, thank you all for your support. It was a tough and rough day at Autism's Edges yesterday.

MothersVox said...

I just followed the link Ballastexistenz posted that takes one over to Wikipedia entry about thought disorder. Thank you Ballastexistenz! That was so helpful.

The entry there explains my whole problem with the "disorganized thinking" not being accounted for by the language disorder. Disorganized thinking is diagnosed through the use of language and supposed misuse of language . . . so how could a language disorder NOT contribute to disorganized thinking.

Saying that thought disorder and language disorder are discrete problems is a case of circular reasoning itself.

My next post ought to be called How Do You Spell Tautology?

But that is one of the posts I won't be writing today. Today we are trying to recuperate from the Dementor attack.

Mary said...

I just want to remind you that the Harry Potter books identify the one thing that will always make you feel better after a Dementor attack: chocolate.

In fact, I'll have some right now in a show of solidarity.

Hang in there.

ballastexistenz said...

Wait... huh?

Disorganized thinking is diagnosed through the use of language and supposed misuse of language . . . so how could a language disorder NOT contribute to disorganized thinking.

Unless I'm reading you wrong... that isn't my point (and in fact could be a dangerous stance to take, that language difficulties would make thinking disorganized).

Language difficulties contribute to the appearance (in the eyes of clinicians) of "disorganized thinking" (as diagnosed by clinicians who use solely language to determine someone's thought patterns).

I could have totally clear, lucid thinking. Totally on target. Clearer than the clinician who is diagnosing me, please get this straight, I could be thinking clearer than most people, my thinking at that point could be less disorganized than the majority of people.

And if you used speech to assess me, and/or if you got me on a day when language was not working well, you could come to the conclusion that I have a "thought disorder". And try to "treat" me for a "thought disorder". When in fact my thinking was totally clear.

Because thought and language are not the same thing, and people with language problems can usually think quite clearly.

I want to give you an example:

I am thinking of not something that you are aware of, it is not a thing that is here but it is a thing that is there. This is not your way of saying that I am okay, this is your way of saying that there is a problem. There is not a single word in this world that could see me here and not think there was something amiss. Your association between the getting there and the coming here is getting away from here and going over there. I can see there is clearly something to be watched for, but it is not where the cat went yesterday but where he is going to be going today. I don't understand what the need is for another way of doing this. There's plenty of things to wonder about already. Can we talk about how to change this now? Because I'm not seeing how it can stay the same. There is nobody waiting here.

Anyone who heard me say something like that would likely say my thinking was quite disorganized, and have no trouble diagnosing a formal thought disorder.

But what did that have to do with my thinking?

Nothing.

I have refined echolalia to a high degree of plausibility. The above was written with no effort whatsoever. All I had to do was connect my language-creating modules without connecting the parts that connect language to something I am actually thinking about. I can do that on autopilot, I certainly had no clue (and still have no clue, since I haven't gone back to read it) what I actually typed there.

Chances are, if it's anything like my usual typing that way, that there are parts of it that pertain to something I was thinking about, but only tangentially. They don't connect up my thoughts, because that kind of language use has little to nothing to do with my thoughts.

It is the language of someone who did not connect up the absolute need to connect thought and language until very late. It is not (at least not in this case) the language of someone who is thinking unclearly, and what is said reflects virtually nothing of my actual thought content.

There are many variations on this language-without-thought but in all cases, a psychiatrist is to be avoided on this because I have not met a psychiatrist on the planet who understands this phenomenon in the least bit. Instead they believe it is a sign of unclear thinking (thinking that mirrors the language, in other words) and will often go to the extent of prescribing neuroleptic drugs on that basis. Neuroleptic drugs have a tendency to widen the gap between thought and language, not close it, in autistic people. This is dangerous ground being tread here, which is why I want to make sure my point is understood (I'm not sure if it's understood or not, but basically you should not have faith in the psychiatric profession to understand the finer distinctions between language disorder and thought disorder once the subject of thought disorder has been broached, but it is of the utmost importance that you understand the line between them so that any time you hear someone saying "thought disorder" based on her language you can turn the other way).

Anonymous said...

Another lurker "coming out" to offer some support. And some inside info. I was in the mental health field in NYC for nearly 10 years (I have sinced moved to greener pastures), and in my experience, met more crazy "highly respected" psychologists/psychiatrists than I'd like to admit. Especially those who have a background in psychoanalytic training -- which several university centers specialize in.

I mean, has this man ever even heard of Asperger's???? Most AS folks are not withdrawn -- come on, has this man ever heard an aspie talk about his/her special interest???? Duh (sorry, but really, come on).

I remember one patient I worked with (adult), looking back, very clearly AS, but received a dx from a reputable psychiatrist of "schizophrenia, residual type" because he showed no overt "positive" symptoms (i.e. hallucinations/delusions) but only "negative" symptoms (social isolation, little motivation, seemingly "apathetic"). It's really a shame.

I know you have been through several evals (and $$$$) but is there any way you could get to a facility that specializes in ASDs???? Stonybrook University has the Cody Center, not sure what centers there are in NYC, but there has got to be a place that focuses on autism research and clinical study.

MothersVox said...

Amanda aka Ballastexistenz (but certainly not ballastexistenz to us who are learning all the time from your insights), I am so grateful for your clarification and questions.

I do not think that thinking and language are the same, but I know that for psychiatric purposes, that's what many in the professions think. Therefore even within their own limited framework, the idea that a so-called thought disorder operates discretely from language disturbances would be contradictory. If one believes that language reflects thought, then the idea that a language disordered kid has a thought disturbance that is not related to their use of language is completely lacking in logic -- the very sort of logic they say that the kid doesn't have!

Interesting that you bring up neuroleptics. He was actually recommending neuroleptics for her, and I am opposed based on experience. We tried two neuroleptics (sequentially) when she was in the worst of her episodes, and they had a horrendous effect.

When I said that the neuroleptics she received made her drawings look scary, he thought I was saying that it was limiting her imagination. I wasn't saying that -- I was saying that her drawings became totally lacking in representation and completely perseverative, and filled with zigzagging rage, even through the sedation that left her sleeping for four hours at school.

I can't see us going back to neuroleptics anytime soon. Probably ever. They annihilated her.

And dear lurker, thanks for coming out of the shadows to share that. I'm glad for you that you've moved on to greener pastures.

I think when we get better health insurance (in the fall when I take a teaching appointment) that we'll try to have an evaluation done at Stonybrook or Yale or Kennedy Kreiger. Or maybe we'll stay away from evaluations forever. See the next post on autism eternities.

Anne Corwin said...

"Annihilated" is a very apt description for how I felt when they tried me on a neuroleptic...it felt like I had no access to any kind of higher-level thinking. I couldn't do my homework. All I could do was wander around like a zombie or cry.

And I agree with Amanda's explanation of the "appearance of thought disorder" thing as it pertains to expressive verbal language difficulties. I had a doctor tell me once that I was exhibiting something he called "flight of ideas", which I'd never heard of at the time but that is apparently one supposed manifestation of thought disorder. I really have to wonder how many scores of autistic people are diagnosed psychotic based on expressive language atypicalities or difficulties -- you'd think people would have more of a clue that a neurological configuration that by definition includes speech differences could result in the appearance of, you know, speech differences. The fact that so many assumptions are made on the basis of people's verbal expressive language really scares me, since though I am capable of speaking words, doing so spontaneously quite often leads to plenty of "word salad", etc.

Anonymous said...

I am really sorry. Does it help if I think this guy is a moron, for all the reasons that the other parents have already cited? I do.

Look, lots of us have tics, rituals, - things that have features of Tourettes or OCD floating around in the pool with our children on the spectrum. I think that all of us struggle with these things. And remember, a psychiatrist has to be VERY attuned to the LIMITS of language to understand and parse problems with language from those of the underlying thought process. HE THINKS IN WORDS, and he therefore assumes that if Sweet M's words are disordered, so are her thought processes. See the fallacy there?

Kill the record. I can tell you that there are great schools out there that take children with any language disorder and work with them. My son attended the Parish School in Houston, Texas for some time -- they didn't care what his diagnosis was, they cared that he was obviously language disordered and bright enough to learn. They worked from there. He came up two full years in expressive and receptive language ability in 9 months there. The right placement for Sweet M DOES exist out there, and I don't want you to lose hope.

This person is one of those Dementors, and you need to just back away and regroup.

ballastexistenz said...

Be aware that if you use this guy's assessment for school. And then the school decides somehow on this basis that she needs neuroleptics. And you try to contest this. And the records you have submitted are on "their side". Then you might be facing something like CPS at your door accusing you of child neglect.

Having no assessment is better than using this assessment, and using this assessment will have consequences for your daughter that you might not foresee.

MothersVox said...

Thanks Amanda. I am thinking about all of this . . . it is so important to be cautious about what goes into a child's record. That is why we have never used her neuropsych with the crazy ODD Dx. How much more bogus can a Dx get?

Anonymous said...

With three sons dealing with a collection of special needs including AS, HFA and Bipolar...I could get a range of dx for each of them from several "specialists"...and have. Bottom line, noone knows our children better than we. Go with the child you know and do what you know to be best.

And this guy needs to meet my very "engaging" "aware" sons living with AS and HFA.

Anonymous said...

Sorry, I am not blog navigation savvy.

A few minutes ago, somewhere on this collection of blogs I mentioned that sleep apnea underlies autism, and the combination in order of bottle feeding and either MMR or DpT cause sleep apnea.

My name, Joe Herr, is on the other one.

Would someone who knows how to navigate provide the lady with information to enable her to read my notes on sleep apena.

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Ettina said...

If there's any truth to his comment about her being 'psychotic-like' (I don't know your child, so I can't judge that) you might want to look into multiple complex developmental disorder (MCDD). It's a mixture of autistic traits, bipolar traits and schizophrenic traits.
Of course, if this is just a psychologist making wildly innacurate statements about things he knows nothing about but is supposed to be an expert in, then disregard my comment.

Anonymous said...

I'm coming into this about a year late since I just stumbled across it by googling. I have to agree with ballastexistenz that you need to put the clampdown on this report. Since it's been a year since this post, I'll hope that you have. The fewer people that see this report, the better. Zero people ever reading it would be optimal. Hopefully you have never forwarded it anywhere and maybe it will just get buried under the avalanche of info that must surely make up her medical record.