Ben's UNC Preschool Assesment Report

I got the full 12 page report finally and as always it was hard to read.  The evaluation team was comprised of two PhD psychologists, a SLP, and two doctoral psychology interns.

The behavioral observations noted:
-he had difficulty maintaining conversation outside of his interest range
-he lacked awareness of nonverbal cues
-his affect was exaggerated
Ben's eye contact was inconsistent and not integrated with speech

Cognitive functioning....He was given the Differential Abilities Scale, II.  His overall score was a 105, 63rd percentile, average range, but inside each domain, his scores seemed inconsistent to me.  In the nonverbal domain, there were two subtests--he was in the 73rd percentile on one (picture similarities)  and the 38th percentile on the other (matrices), which averages his scores in that domain to the 58th percentile.  The numbers were similar for the verbal domain.

Autism Assessment used the ADOS-II....Some notes from that bit....
--"Although Ben produced some relatively complex speech, recurrent grammatical errors were noted."
--voice was high in pitch
--utterances sounded stereotyped
--"it was hard to follow his reporting of previous events, as he tended to start with a true event and morph it into a make believe story."
--"it was difficult to build a conversation with Ben"
--frequent mislabeling of emotions in a book
--rigidity during tasks, having to organize blocks and puzzle pieces
--sensory seeking behavior, such as rubbing his arms and legs observed, sitting perched on his toes in his seat, and tensing his hands and fingers

Diagnosis--autism spectrum disorder in the mild range

Newsflash: Ben still has autism

In April a psychologist diagnosed Ben with high functioning autism.  I did not think her evaluation was thorough and I did not trust her results, so I had him re-evaluated.

I called in the big guns this time and contact UNC Chapel Hill. We live about an hour away from here: http://www.cidd.unc.edu/  They agreed to do an evaluation and Ben left at 7:30am and returned at 4:30pm.  Other than the hour drive and hour lunch break, we spent the whole time with me answering questions while Ben was evaluated, as well as having a feedback session at the end.

The end result is that Ben met the ADOS-II criteria for autism.  They mentioned that Asperger's is no longer in the DSM, but Ben presents more like a child with Asperger's.  In fact, their number one recommendation is speech therapy focused on pragmatic speech: http://www.asha.org/public/speech/development/pragmatics.htm.  This helped fill in the blanks for how Ben keeps testing as not having a speech delay, but many people do not understand what he says.  They noted that he talks a lot and gave them lots of information, but he did not understand how a conversation works.  In addition, his speech went off on unrelated tangents.  He was asked about a picture with a pool and he started talking about how he used to cry in the pool but then he got a light sabre and cut a hole in the pool and the SLP said she totally lost him after that.

There will be a long report coming with lots of recommendations.  Dave just shrugged at the news and said "we knew he had autism already."  That is definitely true, but I am still in denial about needing to track down ABA for Ben, but they told me he needs it.

The other big finding is that they see no evidence of ADHD.  In addition, he had some cognitive testing and his scores were very average (101 and 103) but there was scatter.  All in all, I am anxious to read the report.

Anxiety over Ben's preschool placement

This week, the preschool coordinator e-mailed me suggesting that we change Ben to be screened rather than being evaluated.

The difference is: "A screening is much shorter and looks at the potential for delay.  It helps to pinpoint areas of concern.  This does not require an IEP team meeting to complete referral paperwork.   A referral meeting is required prior to an evaluation and requires the full IEP team.  Evaluations are required for eligibility determination, which depends on which category of eligibility the team is considering."

I want him evaluated, not screened, so this threw me into full blown panic.  The coordinator suggested we decide on screening versus evaluation pending his latest speech and OT evaluation.

His OT is still working on his report, but I finally tracked down a copy of his speech evaluation.

The report states that his eye contact was inconsistent and his attention was so limited that he needed near constant re-direction.  He was impulsive and give answers before a question was finished. During connected speech, he had issues with word retrieval and would substitute a word (knife/scissors).  He displayed echolalia. His intelligibility of connected speech was 65%.

That is just over half for a 4 year old.

I am very stressed and anxious that Ben will not receive placement in a developmental preschool.  If he doesn't, I know he will quietly sit through another year of preschool, not engaging in peers or paying any attention to the teachers.  That will make his kindergarten transition a nightmare.

This post brought to you by the letters D and A.

In February, I wrote about Ben's first appointment for a developmental screening.  He had his second appointment in March, and I got feedback from the psychologist on April 11th.  April was a crazy month; we celebrated 10 birthdays for different kids, started Tball (2 games a week including 7:30pm Friday night games), and had Ben's tonsils out.  That is not the reason why I have not blogged about the feedback session.

Denial isn't just a river in Egypt.  There is the first D word, but there are two more coming.  I guess it cannot be true denial as I sought out the evaluation after being told a year and a half ago that he likely wasn't on the autism spectrum.  Of course, his pediatrician in Alaska told us a year ago to have him re-evaluated by another source, so I did have some reason to seek out a second opinion.

So April 11th has become our family's 2nd diagnosis day (November 3rd is our first).  Rate of autism is currently 1 in 50 children.  Rate in siblings is 1 in 5.  Rate in this household is 2 in 2.  The diagnosis is Autism Spectrum Disorder, based on the upcoming changes to the DSM, but otherwise it would be the same as Liam's, PDD-NOS.

The third D is doubt.  Unfortunately, the psychologist who evaluated him was crappy and her report and pretty crappy.  Ben is on the waiting list to be evaluated by UNC Chapel Hill, so hopefully that will give me some closure. 

I am afraid that people will doubt the validity of Liam's diagnosis.  Generally, I'd say Ben is higher functioning than Liam is.  On a day to day basis, people notice Ben's delays more since he has not received the intensive help that Liam has.

So what led the psychologist to apply the A word, autism to Ben?  Snippets from the report:
--Continued potty training issues
--high pain tolerance
--"his speech was notably inarticulate and difficult to understand at times"
--"repetitive language was observed, he repeated :so soft" four times while touching a doll"
--when asked to describe another doll, he answered brown four times
--"there was little sustained reciprocal communication"
--most of Ben's verbalizations were requests for help
--his scores of the Vineland were higher than only 7% of same aged peers and his scores on socialization were in the delayed range.
--he would not engage in non-preferred activities or those directed by examiner
--his play had a repetitive quality

Autism Positivity Flash Blog--ausome boys

I am the lucky mother to two ausome boys.

Science Kid is an ausome 5 year old who loves science, penguins, and Star Wars.  Despite the fact that everything from language to social interactions to motor skills has been more difficult, he maintains a positive attitude.  He asks a million questions a day and makes me choose my language carefully.  He is sensitive and loves deeply and believes everyone is a friend.  He challenges my intellect and helps me see the best in people.

Word Boy is an ausome 4 year old who loves anything pink, Hello Kitty, spinning in circles, and Star Wars.  He is wary of others and relies on me to help him relate to the outside world.  He is ausome in his unconditional love for me, the biggest squeezes he gives me and his father, and his energy level which never seems to decrease. His sense of humor and sweet high pitched voice and love of seeming contradictory things (princesses and Darth Vader) make me laugh countless times a day.

Autism is what makes my boys ausome.  I wouldn't want them to be any other way.