This blog post is about progress, the main “thing” that all of us autism parents hope for.
The question in the survey was: Since the initial diagnosis, how would you rate your child’s overall progress in terms of improving on the various symptoms of autism? (Using a 1-10 scale, where 1 = “No progress at all” and 10 = “Excellent progress”)
Looking at this question by age group shows that the perception of kids making progress increases as the child gets older. This is good news for all the parents with younger kids – some data to back up what you may have already heard frequently — “It does get better!” – at least for a sizeable percentage of these kids.
However, when I change the chart and look at progress by the number of years post-diagnosis, we see a slightly different story. It looks like the most progress is made by those who are 5 to 12 years out from an autism diagnosis. The percentage who give a top-3-box rating actually drops among those who are 13 or more years out from diagnosis (the top-3-box is the percentage of parents who say that their child has made excellent progress or give an 8 or 9 rating on the 10-point scale):
I found this to be somewhat of a bummer since my son is almost 12 and we are close to 10 years since his autism diagnosis at age 2. I guess I was hoping to see even more progress being reported by parents as time goes by. But then I realized that something else was probably going on. Expectations should increase as we move away from the point of diagnosis, so the “progress” is measured against these higher expectations. Also, there probably comes a time when parents are more likely to “accept” the current status quo and are not working so hard for “progress” – at least not as much as parents of whose kids were diagnosed more recently.
Next blog post: More on Progress: by co-occurring conditions and by type of autism
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