Today, we went to a second eligibility meeting for Sophie to receive IBI (intensive behaviour intervention, a one-on-one ABA funded by the province. The ONLY form of autism therapy funded by our province. Not that we're counting). In the first meeting last year Sophie didn't qualify because was deemed not ready (we didn't dispute that at all). So today. How to say this. Well.
First of all, we were mailed a questionnaire to fill out ahead of time. It consisted of all the typical questions. Does she blow kisses, wave bye bye, point to belly button. Now, as I was solidly filling out the "no" column of the paper, I wasn't feeling "oh poor me my autistic child is not anywhere close to where she should be". I was actually feeling quite fed up by the apparent missing of the entire point of this test- yes, she doesn't point to belly button, she doesn't wave bye bye, and she definitely doesn't blow kisses. She does not give a crap about those things, because unlike neurotypical children, she isn't motivated by social feedback. I think measuring autistic children against neurotypical benchmarks doesn't provide a clear or relevant reference point.
Example. During most of the appointment, Sophie was sitting and playing on the iPad. She now completes the Thomas puzzle almost totally independently, and is able to access the menu and scroll through the video options and select the one she wants completely by herself. She knows she can't touch the screen when the video is playing because it will stop. Her little brother can't do those things. But yet, gauging intelligence according to the test we filled out, he's ahead of her by leaps and bounds because he can blow to indicate something is hot, say hi, pretend to feed a doll, etc. Does this mean he is "smarter" than Sophie? We don't think so.
He is definitely way ahead in social intelligence. He is a social being, ready and willing to be integrated into society. She isn't. However, when you engage with her on her terms she shows a wisdom and awareness beyond that of her toddler brother, who seems to be so "ahead" of her.
Example 2. At some point in came up that Sophie is approaching phase 4 of PECS. The ladies were blown away because that completely shattered the image of Sophie they had formed in their minds. PECS is a "scientific" quantifiable skill- I guess they couldn't imagine her having any of those.
The psychologist did admit that Sophie doesn't present in the "typically autistic" way. While aloof and socially unmotivated, she seems quite calm and at ease in new surroundings and situations. It is hard to explain. I suspect it might be a combination of her personality, perhaps her brain malformation (Polymicrogyria), but I also think the DIR approach we naturally take with her contributes a lot as well. I don't know what "typically autistic" children act like. The ones at the centre where she receives her ABA seem more active and loud than Sophie but what does it mean exactly, I don't know. If we take "autistic" to mean focused inwardly and self-centred then she is. If we attribute a whole list of stereotyped behaviours and body language then she is ambivalent on some, except for the social/communication aspect which she fits to a T.
Their conclusion? While not official yet, their opinion is that IBI is probably not the "best fit" for Sophie. A more natural, child- led approach, like the one at her school is better suited to her needs. I cannot say we are surprised, or that we disagree. While we are a bit resentful of the fact that our government only funds a one-sized approach for all autistic children because it is "scientifically proven", that is not the fault of the (nice) ladies we spoke with today. I do wonder if our own attitudes and viewpoints affected the outcome. At one point while they were outlining "the method" I blurted out that "it's not my objective for Sophie to be compliant, I am not compliant myself". So there's that.
So if ABA isn't it, what would be my "dream therapy" for Sophie? A place which would see her as a person, a child, not just as an "autistic client". We see her as a child first, a 3 year old child at that. We would want her to learn like all 3 year olds learn- through silliness, through play, through gross motor activities, through circle time, through sensory play, through peer interactions. We would want someone to spend the extra time on the critical skills she needs help with- communication and social interactions. How is an autistic child to learn social functioning locked in a room with a therapist for 20 hours a week I cannot imagine. Lastly (but importantly) I would want someone who is working with her to see her as capable and not be surprised that she "can" do something as if they didn't expect that at all- that is NOT the attitude I want her around!
And so I think at this point her school fits all the above criteria and it is the RIGHT place for Sophie and removing her from there and putting her through IBI seems not only unnatural and wrong, but downright cruel.
|She rocks, and we are not surprised|