So remember how the APA swore that the DSM V wouldn't...

Post Reply New Topic

...prevent kids from getting diagnosed and getting services?

The clinic called us and had a cancellation, and asked if we wanted to take the appointment. I, of course, said yes. We went down there and had the interview.

The doctor pulled out both the DSM IV and the DSM V, and said that he was sure that the Sprout met the old requirements for Asperger's, but he didn't feel the Sprout met A1 under the new criteria. He wants to see him a year from now to see how he progresses since Aspies tend to be more obvious when they are a bit older than the Sprout (He turned 5 at the end of June).

He wants us to get him into OT and social skills group. I pointed out that the state insurance is unlikely to pay for those things without a diagnosis, but said I'd take him to an OT for an eval (we had one set up for a few weeks from now anyway). Basically, we're getting punted back to limbo land of identified needs with no diagnosis to cut through the bureaucracy to qualify for the needed services.

A. Deficits in social communication and interaction not caused by general developmental delays. Must have all 3 areas of symptoms present.

****1) Deficits in social-emotional reciprocity; failure to have a back and forth conversation.****

2) Deficits in nonverbal communication such as abnormal eye contact and body language or difficulty using and understanding nonverbal communication, and lack of facial expressions or gestures.
3) Deficits in creating and maintaining relationships appropriate to developmental level (apart from relationships with caregivers). This may include trouble adjusting behavior to suit different social contexts, difficulties with imaginative play and making friends, and a lack of interest in other people.
B. Demonstration of restricted and repetitive patterns of behavior, interest or activities. Must present two of the following.
1) Repetitive speech, repetitive motor movements or repetitive use of objects (echolalia, idiosyncratic phrases).
2) Adherence to routines, ritualized patterns of verbal or nonverbal behavior, or strong resistance to change (insists on eating the same food, repetitive questioning, or great distress at small changes).
3) Fixated interests that are abnormally intense of focus (strong attachment to unusual objects, restricted interests).
4) Over or under reactivity to sensory input or abnormal interest in sensory aspects of environment (such as indifference to pain, heat or cold, negative response to certain sounds or textures, extreme smelling or touching of objects, fascination with lights or spinning objects).
C. Symptoms must be present in early childhood (May not become apparent until social demand exceeds limited capacity).
D. Symptoms collectively limit and hinder everyday functioning.


So anyway, it's now semi-official. I have an Aspie!

Gosh, that is frustrating!

So, if I am understanding you right (B/c I am sleepy, not b/c you were unclear) he is too reciprocal for a diagnosis according to the new standard? How long did they observe him for?

I am curious as to how that is currently defined, as just looking at what you typed there seems to be a lot of wiggle room. I mean what if someone can have a back and forth conversation, but it has to be about a special interest and they have to be in charge of it? Socio-emotional reciprocity is awfully nebulous, too. What if you occasionally can show empathy, but not all the time. How much empathy can you show and still meet the criteria?

I hate vagueness.

We were there for about 3 hours. Sprout was on his absolute most engaging behavior (of course, right?). I should have the report in my hands in a few weeks, so I'll have a more clear understanding for myself about the specific things he was objecting to. He said a couple of times that this is a transition time on figuring out what they can really do with the new criteria, and that they aren't feeling like they have the wiggle room that they had with having PDD-NOS and AS available. Maybe the biggest thing behind wanting him back next year is that they'll have that wiggle room figured out by then.

"what if someone can have a back and forth conversation, but it has to be about a special interest and they have to be in charge of it?"

This is very true with him.

I think it may also be because at the age of five, children are still not developed enough to exhibit a distinct difference between NT and non NT behaviours (social and sensory). My daughter was only diagnosed HFA three yrs ago (she was 8 then) because they could not accurately measure whether or not her behaviours were typical for a child her age (and believe me, we were in that doctor's office every year from 4 on)...that was under the DSM IV.



My team always asserted that in this sort of case (also my daughter's) the conversation then isn't give and take, because if one is in charge of the conversation and the content of it and the nature of it is so restricted it is still very much a one sided communication.

In any event, keep your head up!! ! There will be wiggle room.

At 5 and even 6 my son did not have enough of the indicators of Aspergers or HFA, now at almost 8, he has enough of the indicative behaviors to finally get the help he needs. I feel for you, and can understand your frustration. Try to work with what they are willing to give you for now, and try again.

Really stupid question but with all the emphasis placed on early intervention, why are they so comfortable delaying a diagnosis? We were "lucky" in that my son's social skills were in the bottom 1/10th of 1 percentile, so we were diagnosed by 4 despite having no verbal delays and no non-social cognitive issues, (just idiosyncratic and pragmatic speech issues and a ton of social issues and rigidity etc.)and probably could have been diagnosed earlier.

It seems that unless you are a real outlier they are waiting. I understand it is harder for mild AS cases, but it seems like they are waiting for other kids, too.

Is the early intervention stuff mainly verbal?

My oldes is HFA and had multiple moderate to severe delays. His early intervention was definitely not mainly verbal. He had fine motor, sensory integration, gross motor, speech for phonology, self help skills, some social skills work, just a lot of stuff. I know the Sprout's needs are different. I really have no idea how they'd go about getting him to socialize more effectively. He doesn't WANT to socialize at all. At some point they asked him if he had friends and he told them no. They asked if liked to be around people, and he told them no. Then they asked him if ever felt lonely, and he told them "I'm always lonely, but I like being alone." I think he took lonely literally as meaning by himself, not the feeling.

The early intervention access is one of the two things that are really frustrating about this. The other thing being that, he does apparently meet the criteria that were in place until May, but somehow barely misses the new criteria. If they hadn't dicked around with the DSM and taken out Asperger's, I wouldn't be having my current worries about accessing early intervention.

I realize that not all Aspie's are super smart, but the Sprout is very smart. His IQ hasn't been tested, but my guess is that he's in the mildly gifted range. His raw language scores when he was barely 4 ceilinged in the 12 year old range with mastery in the 7-8 year old range. He has average gross motor skills, within normal limits (on the low side of normal) articulation and fine motor skills for his age. Without a diagnosis, the requirements to get assistance for the social communication and sensory integration problems REQUIRE him to have multiple delays, and those two don't count toward the red tape threshold.

Without a diagnosis it honestly doesn't matter if his sensory issues are wreaking havoc in his ability to fully participate in life--OT isn't covered. Without it, it doesn't matter if he can't communicate with peers even a little bit, he can't get into speech. So knowing that if I had been half a year quicker in getting him down there, he could have had a diagnosis is really getting to me.

I've come to think of early intervention as part of the defense against a severely affected child basically giving in, tuning out and isolating themselves. Finishing off the bubble they've started to build. I'm not sure my son was ever in danger of completely cutting himself off from the world in any of those earlier years, not in the way that I believe experts fear some more affected kids might. While I would have liked to know sooner so that I wouldn't have blamed him for some of the things I did (he wasn't diagnosed until 7), I also am glad that I was never under any pressures to get him into intervention, and he had those years to just "be" as he is. I can't imagine anything would have been better for him by dragging him around to appointments and forcing him to spend time with specialists; he developed so much confidence in those years just being himself, and as much as there were conflicts and issues with children his own age, he was also getting tremendous amounts of positive feedback from adults.

Now, when he got to elementary school, I started to see him building walls, and that was part of the drive to get a diagnosis, which we did when he was 7. We got what he needed in time, when he needed it and was responsive to it.

Want my guess?? Money for early intervention (and people who are actually qualified to do it) is/are limited.

Those spots are going to go to the moderately and severely affected kids.

Meanwhile, a kid who would have been labeled Asperger's under DSM-IV is more likely to be able to figure it out on their own, or with the help of an intelligent AS or educated NT parent.

This is, ad nauseam, the boat I am in. Having figured pretty much ALL of it out on my own, or with the help of good-hearted laypeople, there is nothing they can do to help my functioning. They can treat the depression, anxiety, and/or PTSD that comes from not functioning well enough to keep from getting kicked, and they'll be happy to help me fix it AGAIN the next time it happens, but they don't have a clue how tohelp me fix the functioning so it won't happen again in the first place.

Part of it, I would ascribe to it being hard to sort out AS/mild HFA from being 4, or 5, or 6, or 7. Being hard to sort out from normal behavior until the standard "30% behind" thing becomes a discrepancy of an entire developmental stage.

Part of it, well, honestly I think they don't want to admit that they are not sure how to tell, and not sure what to do.

You job in the interim?? Teach him to moderate some of the more annoying behaviors. Teach him to engage in inconspicuous, ahem, self-soothing behaviors. Teach him to look 'em square in the nose (fools 85% of people-- including evaluators, so bear that in mind-- about 90% of the time). Talk about appropriate and inappropriate ways to enter into, initiate, or engage in a conversation. Teach him what he can do when upset instead of lashing out/bursting into tears/running away. Take him to the library.

Mostly, teach him that everyone has different strengths and weaknesses. Teach him that it's OK to have strengths that are even more different than average, and set him on a path to taking advantage of them. Teach him that it's OK to have weaknesses that are bigger and more pronounced than average, and set him on a path to minimizing and compensating for (and also learning to tolerate) them.

LOVE HIM. TEACH HIM THAT HE IS WORTHY OF THAT LOVE, EVEN WHEN HE SCREWS UP. AGAIN.

Because he is going to screw up. Again and again and again, no matter how soon they get him into what kind of treatment, over and over and over.

And they are NOT kidding when they say that the lack of self-esteem that occurs with atypical development is more debilitating than Asperger's itself. You can't protect him from that with all the sheltering, all the therapy, and all the compliments in the world. You can't protect him from that, PERIOD. You CAN mitigate it with correction, and realism, and telling him when he's right and telling him when he's wrong, and most of all with a mother that's going to love him and praise him and correct him and feed him and give him high-fives (and a swat on the bottom, or a sit in the corner) JUST THE WAY HE IS.

So I was at church today telling the Sprout's Sunday School teacher what the guy said at the appointment, and another mom was sitting at the table listening. Turns out she is one of the state's top autism advocates. I didn't have paper and pencil to write down all she was saying, but I got her phone number and she said we could set up a time to meet to get more info. She was telling me all about how to get a second opinion to complain about our insurance in such a way as to get him on the state waiver program that does cover the autism treatments that my ERISA governed employee insurance feels free to ignore, how to get help filling out the paperwork I never could get through to get my oldest into the programs he was supposed to have been gotten into months ago. Even invited me to testify for the state congress that the clinic was saying the DSM IV versus V thing. (I don't think I want to do that. I'll say the wrong thing and mess everything up, maybe once it's in writing--assuming he writes down what he said, and not some other thing entirely like I've had people do to me before, I'll let her show the report to show it is happening.) But everything else sounds amazing.

Miahclone, I am glad you are making headway.

For this idea to be relevant, the doctor would have to be tailoring his diagnoses to game the system as part of distributed conspiracy involving many other doctors, school officials and legislators.

I don't think this is plausible.

It seems far more likely that the DSM is a confusing mess and this particular doctor has botched it.

The doctor can't BOTH claim that the kid NEEDS all kinds of expensive intervention and training AND that he can't be diagnosed because his impairment is not severe enough. If he needs the proposed intervention, then he is impaired. If he doesn't need it and the doctor is recommending it, he is probably involved in some kickback scheme with providers of those services and should be sued for malpractice and prosecuted for fraud and conspiracy. Sadly, while vast public/private conspiracies are rare, little conspiracies to rip off state funds or insurance companies are relatively common.



This is awesome. Please do testify if you can! Congratulations on being at the right place at the right time.