Auntie, a couple of other questions when you have a sec

Re: Auntie, a couple of other questions when you have a sec

• funchicken member

  August 2012

  -auntie-:

  mrszee2b:

  Do you think that the diagnostic criteria for Asperger's are skewed for boys and perhaps older children? 

  The diagnostic criteria are useful for those aged 3+ because of the criteria around age appropriate language and adpyive skills. Toddlers aren't expect to have much in the way of social behavior with peers, language or self care skills, so it's hard to make the call around age appropriate.

  The OASIS Guide was written by two moms (one is a BCBA now, but wasn't at the time) who have sons who were dx'd even older than my son was which was par for the course in the old days. Girls were really rare in those days and if dx'd typically ended up with OCD and/or ADHD instead. Barb and Patty's, the authors, sons have very different presentations. One is a a brilliant PhD student who could be friends with the gang on Big Bang Theory, he attended a selective charter school without any special education or Section 504 accommodations, today he might seem quiet and smart to the casual observer. The other would strike you as different almost immediately. He's very intense and struggles more with life outside his home and academics. He's gotten tons of services and attended camps and private schools especially for kids with AS.

  I'm reading through this stuff, and I do think that DD shows naivete and some awkward social interactions, but it can be really subtle sometimes.  I'm thinking of the "Failure to develop peer relationships appropriate to developmental level" piece.  One of DD's rote memory talents is an uncanny ability to remember people's names.  Obviously this works in her favor socially.  When you combine this with the way girls her age socialize, on the surface she seems fine with her peers.  She even had a "best friend" in school last year, and when they see each other they get really excited and run off to play together.  When she gets upset and has an outburst, the other girls will mother her to help her calm down.  Her six year old cousin is an expert at this. 

  This would be DS in preschool. He had a best friend in young 4s and two good buddies in Pre-K. He faltered a bit in kindie, in part because the boy he was often paired with and who sought him out was a socially fragile as he was. He had OCD and LD issues and made my kid look positively easy. His mom was still carrying a Ziplock of Cheerios in her purse when he was 7, he couldn't pee in front of other boys, he would only eat food with Kraft parmesan sprinkled on it and arrived for playdates with a can.

  Not surprising about the girls. I've heard about the mother-hen behavior of primary grade girls. Sadly, these same girls will likely change around 4th grade as they become more conformist in their thinking. It's a normal developmental phase but it can be ugly. This is definitely something I've thought about.  I used to teach in an afterschool program, so I am well aware of the shift at this age.  I actually think it happens even earlier.

  
  

  I'm also noticing that her echolalia seems worse in an unstructured group setting (like the OT waiting room).  Often she will hear something that another kid says (usually an older kid), and she'll repeat it several times.  That seems to fit in with the difficulty understanding social situations.  In her OT session yesterday there was almost no echolalia that I could detect.  That was a much more straightforward interaction.

  Typically echolalia and stimming behavior ramps up under stress and boredom.

  Maybe I don't understand all of the nuances of the diagnostic criteria.  There was a section at the beginning of the OASIS Guide that talks about differences in Asperger's in girls--and it addressed some of these things.

  My other question is, do you wish your DS had been diagnosed earlier?  How would it have changed things for you?  I think you mentioned that he was diagnosed when he was seven.  I hope I'm not being too intrusive.  This is just coming from the perspective of someone with a four year old who still just gets to be a kid right now.  We're doing OT for her sensory issues and fine motor deficits, but I'm wondering if that's enough for right now.

  Not intrusive at all. On one hand I look back on preschool as something of a honeymoon period. For the most part DS was well accepted and included and was pretty much doing everything his peers could. But even at 4 he would sometimes balk at going to school and would tell me he "wasn't like those other kids who like that kind of stuff." Like any honeymoon, it came to an abrupt end with bills to pay, lot's of laundry and a lawn to mow.

  Had we had the dx in time to get EI or preschool services, we might have been able to work on the social piece so that he wasn't as far behind when he hit kindie. Perhaps we could have narrowed the gap somewhat. Because DS was behind socially, he was pretty much ignored by the more well developing kids in his class and consequently had few good peer interactions. This meant he was left with the only other kid in the class who was weirder than he was. DS's early friends all had issues- ADHD, OCD, ODD, LD, CAPD, Expressive Language Delays. These kids were often unpleasant and uncooperative which meant interaction didn't offer the reward needed to make engagement and peer play attractive. This is a really good point. I really, really wish we could have addressed this proactively because it impacts DS even now. He doesn't really have what I would consider a true friend. He gets invited to large  events associated with groups to which he belongs, but the call to go to a concert or just hang out never comes.

  Short answer, DS got to be a kid in preschool but didn't learn the unwritten social curriculum needed for elementary and it bit him in the ass. Knowledge is power. Knowing what your child needs is the only way to help them be their best self.

  FWIW, I didn't entirely have my head up my butt in those days. I asked DS's pedis why he was sort quirky and intense and was told he was the "overvalued only child of older parents". For real. I in no way thought you had your head up your butt.  I just don't think pedi's are qualified to evaluate things like this, and first-time parents don't know any better.  That's certainly the case with me.  I've been telling the pedi about DD's sensory issues for years, and she keeps telling me DD will grow out of them.   His preschool teacher couldn't suggest anything other than that he was very bright but should be red shirted and sent to private school which further complicated getting identified. The first person who ever put autism and DS together in a sentense was a college aged swimming teacher who suggested that DS's behavior was similar to the autistic kids he taught at Easter Seals camp only he was really smart and could talk. Nailed it where 4 early childhood ed teachers and 3 pedis missed the boat.

  OT is great, but it teaches nothing about the social and emotional delays associated with an ASD. This might not apply to your DD, but if it does the delay in matruity is expressed as a percentage of her age, not an absolute number. If she has it, she will fall farther behind her peers.

  I'm reading some essays by Temple Grandin, and she talks a lot about pathologizing differentness, so I've been thinking about this stuff a lot.

  I actually just picked up the Grandin book for the essays relating to SPD and thumbed through some other ones at the same time.  Most of DD's outbursts seem to be related to sensory overload, and one of the things that Dr. Grandin talks about is how great an impact the sensory piece had for her.  JMHO, you have to be mindful reading essays written by adults on spectrum because while they can speak eloquently to their own personal experience with an ASD, they do not have the same ability to synthasize the experiences of others- and in fact may assume them to be like theirs. It's that theory of mind/empathy thing. Dr. Grandin is a lovely and intelligent person, but she can not speak to how others experience autism.

  It's kind of ironic that parents are drawn to Grandin as reason not to pathologize differences. Have you read anything about the Temple Grandin who was your DD's age? A bit. There was a tremendous degree of atypicality met with a comprehensive treatment plan. Her mom's book describes how she raised her DD in a time when children like her were institutionalized and forgotten. I would draw the parallel to Helen Keller; Helen was a remarkable person, but Annie Sullivan was the miracle worker. Cutler was able to pay for her DD's care out of pocket; you probably van't afford the program she had in place for Temple. Only a label will give you access to that should your DD need it.  I agree.  My DD's teacher for next year used to work for EI, and I have an evaluation through the school system scheduled for two weeks from today.  The teacher has been giving me tips on the eval.  I'm also going to talk to our pedi in a few weeks.
  

  https://books.google.com/books/about/A_Thorn_in_My_Pocket.html?id=Leah65fUsVIC

  I have wasted countless hours at teacher conferences and IEP meetings trying to disavow well meaning professionals of the Grandinesque notion of thinking in pictures. It is not the universal trait. I know from experience that DS is not a visual learner and yet teachers ignore the student in front of them and insist he is.

   

  Off my soapbox now.

   

  Thank you very much for your thoughtful response!
  

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