The Assessment

We received a copy of Jesse's assessment in the mail a couple of days ago. It really helped me understand what Dr. Crosbie had been trying to explain to me last week in the office, when I was too stunned to think. I still have a lot of questions, of course. Hopefully many of those will be answered by the social worker next week and by Dr. Crosbie herself when Steve and I meet with her to discuss Jesse's case.

I've been debating on whether or not to post some of the assessment online. I wasn't sure I wanted that info out there for the world to see. But then, today, I took Jesse to McDonald's to play in the playroom while I had a cup of coffee. A father and his young son sat next to us while I was getting Jesse ready to leave. He asked me how old my son was and I told him Jesse had just turned two. Then he asked me if he was talking much. I said, "no." (We get these comments nearly daily, since Jesse is usually really quiet in public.) And then he said, "Yeah, my little guy will be three in August and he doesn't say much either. They say it's a boy thing." I didn't know what to say. Should I have told him about Jesse? I really didn't know what to do. What made it even worse was that this little guy reminded me very much of a family member who also has Autism Spectrum Disorder. If I said anything, would it have upset them? I really don't know.

So this is the big reason why I'm posting this. In case anyone out there has concerns about their child but has had it beat into their head that their child is "fine." The lesser, but still important reason, is that I'm getting tired of the "you're crazy" or "don't be silly" reactions whenever I've mentioned something being "not right" with Jesse (even though I, myself thought that it was just a speech issue). Maybe this will help people see why I've been concerned. I'll skip through a lot of it and focus on the actual assessment part of it. This was written by Dr. Crosbie but I've added my own notes in italics, to clarify and/or elaborate. Here goes:

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Jesse Snow is a young man reviewed through the Development and Rehabilitation Division as an urgent pediatric consult on December 7, 2009. (I didn't realize that a ten month wait was still considered an "urgent pediatric consult." Can't say I'm surprised though.) At that time presentation was characterized by a loss of speech. He had 9-10 words at 10-13 months of age and subsequently lost them. There were concerns with respect to motor delay but he did have a tight heel cord with contracture on the right foot and [had been] serially casted. (I just want to note here that Jesse's prior toe-walking was labelled "idiopathic", even though his wonderfully perceptive physiotherapist had mentioned that suspected it was a sensory issue. We're now dealing with this being an issue again, as he toe-walks more than he walks flat-footed.)

Family history is positive for....Autistic Spectrum Disorder....(I'm not comfortable giving more info than that, since it's not my (or my child's) medical history.)

Parents have been less and less concerned about Austistic Spectrum Disorder as time has gone on. (In very large part due to everyone and their dog telling me Jesse couldn't possibly have autism.) Jesse is being followed by Speech-Language Pathologist, M.S., who felt primarily his language was behind. (He hasn't been seen by her since last summer.)

At the age of 23 months words included mom, dad, hi, Jess, sometimes boots (and boobies)....

Parents note response to name is variable however he understands everything that is said. During the course of the office appointment he was making tea, pouring, stirring, and giving cups of tea. No repetitive play was noted. There was no unusual television shows watched. He eats a variety of food, continues to drink from a sippy cup, and is breastfed 2-3 times a day.Some early imaginary play was noted in the office. There is some contact with other children at playdates and a play group....

Sleep is generally non-problematic. (Is not *now* but was for 18 months of his life!) He previously hand flapped but this has extinguished. There was no hand gazing or finger gazing noted....

Abbreviated physical examination revealed a long lean child....Neurologically he appeared to be intact....

Given the concerns around language regression and some of the inconsistent response to name decision was made to proceed to complete an Autism Diagnostic observation Schedule (ADOS) Module 1. This was complete on February 1, 2010.

Jesse participated quite readily in all items on teh ADOS. The ADOS was administered by C.P., Occupational Therapist with assistance from D.S., Speech-Language Pathologist. At the time of assessment, Jesse was 2 years, 3 weeks of age.

While Jesse did perform many nice communication attempts throughout the assessment it was overall felt that his use of eye contact and social interaction were not typical for his age.

The scoring of the ADOS is divided into a communication and reciprocal/social interaction domain. The communication domain is looking at the frequency of vocalizations, use of stereotypic language, use of other bodies to communicate, pointing to point out things of interest as well as to get help, as well as gestures. Jesse obtained a score of 2 in communication which is at the autism spectrum cut off score. Reciprocal interaction is exploring eye contact, direction of facial expression, shared enjoyment and interaction, showing behaviour, joint referencing, response to joint attention, and quality of social overtures. His score of 8 in social interaction is just above the autism cut off of 7. His combined score of 10 is just above the autism spectrum cut off of 7 but below the autism cut off score of 12. 

Overall it was felt, given the history as well as the curerent presentation, that the appropriate diagnostic label would be one of Pervasive Developmental Disorder Not Otherwise Specified. This is an Autistic Spectrum Disorder. This makes Jesse eligible for the Provincial Autism Intervention Program....

It needs to be stressed that Jesse is making quite rapid gains. (I'm not arguing, but I'm not sure what she was referring to here.) It is anticipated that involvement with the Autism Intervention Program can only serve to speed this up. My plan would be to repeat an ADOS when he is 3 years of age and review the need for ongoing programming....

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