Looking for Autism: the saga continues

We are back in school this year as a first grader and I gave the teacher a couple of weeks to settle in before I went in to chat with her.  Since we aren’t homeschooling any more I really need this feedback from someone who deals with him all day long.  Not to mention she sees him with all his other peers where I would expect his deficits to stand out more.

So I asked her how she felt he was doing?  She just looked at me with a puzzled expression and said he is doing great.

ME:  “Ok, so what I mean is on a scale of 1-10 how do you think he is doing socially?”

TEACHER: “He is doing very well he plays with the other kids and enjoys recess and when he chooses to so an activity on his own like read a book he is fine if another student joins him and he returns to the group just like any other student would.”

(Obviously she is not understanding I want to know about his deficits, so I try again)

ME:  “That is great.  But if you had to assign a number to the kids.  and 1 is say this child doesn’t belong in a regular classroom and 10 is perfectly neuro-typical indistinguishable from his peers., and fits in the class exactly as he should  Where would my son fit?”

TEACHER:  “Well, I would say he is maybe a little more mature than the other children in the classroom.  We will know more after they finish the testing on Tuesday, but they might talk to about the possibility of moving him up a grade.”

(Now I am the one with the puzzled look on my face)

ME:  “Well, we did hold him back a year to give him the best chance at catching up socially.”

(but I am thick headed and I came here for a deficit darn it and I am determined to get one)

ME AGAIN:  “I know my son has a little bit of an odd word choice and some precocious language.  I am not really looking for something I need to change, but just something to watch to see how he is progressing.  Can you come up with any kind of behavior or thing that he does that kind of makes him stand out from the other kids a bit.  Something that perhaps could be watched and measured for progress?”

TEACHER:  “Well, I don’t know, I wouldn’t exactly call it a deficit.  In fact it is endearing, but when he gets very happy and excited he kind of jumps up in his chair and squeals with joy.  It is just a moment and it makes the rest of the class happy and laugh and it is contagious.  I really wouldn’t want to see it go away, but is that what you are looking for?”

We finished our conversation with some small talk and she said she would watch him a little closer and if she happened to notice anything she’d make a note of it for me.  I thanked her and assured her that she needn’t go out of her way, but I would be very appreciative of any feedback she had good or bad.

So the question remains.  Where oh where did this elusive Autism gene go?  I mean my son didn’t regress he was born Autistic.  For all intents and purposes he still should be.  Could he really have been cured of Autism.  I mean sure, we have always hoped.  We did biomed and chelated (still chelate) in the hopes that it would get rid of the Autism.  But did I ever really believe it?

No, I am still waiting for it to leap out and bite us in the butt.

I think I have a tiny glimpse into the world of PTSD.  I am still holding my breath and I am still watching and analyzing, and picking up on every possible deficit.  I do this silently to myself (I would not do it in front of my child) because I can’t really imagine that we may see a day without supplements and weekly rounds.

I been eating, drinking, sleeping , and dreaming Autism for so many years.  It is hard to imagine a life without it.  and I have been secretly afraid to actually think it would ever really be gone.

Maybe I can actually let myself hope?

 

Trying to find the Autism: Theory of Mind

We have had our son tested every few years to see how he is doing/progressing.

I did let the testers know that he had a diagnosis of Autism, but I did not give them the actual tests to look at as I wanted their unbiased assessment on how he was doing at the time of the test.

The past summer (2011) we had him tested by the school district.  They ran all the typical Autism tests, they tested his sensory issues, they even tested his cognitive abilities this time as he was able to read and could get more thorough testing than in previous years.  They then decided to test his speech as well.  We had a total of 5 appointments to complete the variety of tests.

About a week or so after the last test we had the results appointment.  They found that his mispronunciation of the letter “L” was not age appropriate and he qualified for 1 hour per week of speech to address this.

Huh?

Ok and………?   Nothing.  No autism.  No Pdd.  No Aspergers.  Not on the spectrum.  No part time in the Special needs classroom.  No aid or shadow.  Nothing.

There are a lot of parents who claim their child is recovered and I do not make that claim as I can still see a few things that make him look slightly different from his peers (some slight oddness in the way his arms move when he runs, some precocious language, and a sporadically his tone is, well, odd).  So recovered? No, but is there any Autism?

Well another parents mentioned the Sally and Ann test for theory of mind, so I did this with him, fully expecting him to fail.  He passed.  He passed both what is she thinking and what does he think she is thinking.  Wow!

I decided to go a bit further this past week and really see if I could find the Autism.

I searched online and found a variety of links for theory of mind sample tests and questions.  I read him all the questions I could find. In all he took 5 tests and he passed he missed all of 2 questions.  He got questions correct that were labeled as memory (of course this is to be expected as it has always been his strong suit), TOM1, TOM2, and TOM4.

Now these were just internet sample test given by his Mom, but I tend to be hard.  I did not give him any clues or repeat options when he got one wrong.  I was really looking for some measure to go by to watch these last skills come online.  See we started by using the ATEC (his first score was132), when he scored 0 on that we went to the child brain pdd test.  he started in the 70’s on that test.  When that went to 0 I had nothing else to use, this is what prompted me to look for these TOM questions.  Now I am just at a loss.

I can see the Autism in his slight oddness of posture and word/phrase selection, but I can’t seem to get a handle on anything else.

Could that really be all we have left to address………………………?  I suppose only time will tell.

http://www.staff.ncl.ac.uk/daniel.nettle/liddlenettle.pdf

http://www.iidc.indiana.edu/?pageId=424

http://www.psychologytoday.com/blog/aspergers-diary/200805/empathy-mindblindness-and-theory-mind

http://psych.wisc.edu/lang/pdf/Gernsbacher_autistic_modules.pdf

http://www.staff.ncl.ac.uk/daniel.nettle/liddlenettle.pdf

Autism Idioism: “Some kids just grow out of it.”

Subject: Quinn, a boy with autism, and the lin...

Yes I did just make up a word.  Guilty.

But what would you call a commonly expressed statement made about Autism as if it is fact when it is purely fiction and often rude to boot?

Idiom: A form of expression natural to a language, person, or group of people

Ism: A distinctive practice, system, or philosophy, typically a political ideology.

Idiot: A stupid person.

I am sure you all have a host of unintelligible statements people have made about your child or Autism in general.  I am usually pretty patient with the ignorance but sometimes it just crosses the line.

I was talking to a parent about my sons amazing progress with chelation.  I was explaining that regardless of the politics and double blind peer-reviewed studies doctors need in order to “treat” our children, we as parents can decide if something is helpful based on observation.  That based on the amazing benefits we have seen with chelation it is quite apparent that he had heavy metal poisoning.

That is when another parent felt the need to join the conversation just to tell us about her friend’s child who just grew out if his Autism.  She said that is probably what was happening to my son.  Unbelievable.  What is even more unbelievable is that I have actually had two unrelated people at two separate times make this same suggestion, lol.

Another Autism idioism we hear all the time is that the quiet, quirky kid we sat next to in school was probably Autistic, but they weren’t as good at diagnosing it back then.  (It was actually my son’s pediatrician who said this to me).  One problem with that theory, I do not recall that quirky kid ever flipping out, screaming, throwing things, then hitting, scratching, and biting any teacher who tired to contain him just because someone moved his eraser.  Thanks to chelation we no longer see these total meltdowns, but they were so much a part of our daily lives I can not imagine someone suggesting my son could have ever gone undiagnosed.  No, that quirky kid did not look anything like my son.

Do any of you have Autism Idioisms you’d like to share?

 

 

I have to fix this, me and only me

Like I said in another post,  I found his autism by searching the web for a friend.  So now what?

Well the search was on, the hours and days of reading and research.  It was consuming me.  I had to find the answer.  Of course my dh was in complete denial.  Like most fathers he didn’t want to hear it.  (He is completely on board now, but this was in the beginning).

I couldn’t eat, barely slept.  I was running on adrenaline.  I was making appointments trying to get him into ABA therapy (getting on waiting lists),  searching biomed sites, joining yahoo groups.

It is so hard to understand biomed from disconnected posts on yahoo.  I went to the library, checked out books etc…

I didn’t even give myself time to let it sink in.  As usual I went straight from: we have a problem…. to… find the solution.  There was no time to mourn for the lost future.  There was no time to breathe.

And I was alone.  There was no doctor to help.  I had no friends who had been there before.  No family members to tell me to slow down (I do not live in the same state as my family they are many miles from us).  Just the weight of my child’s future on my shoulders.  All I felt was urgency, I wouldn’t even let the fear in.  My baby had fallen off the edge of a cliff and I had to find a way to catch him before he hit the ground.  I was a robot running on coffee and determination.  And the stress was about to devour me.

(to be continued)

 

Related to:

https://throughthepuzzle.com/2012/04/20/hello-world/