I’ve been helping out at a local center that’s started a new program for autism assessment.  I’m not sure how much I can say about it on here, since of course the kids are confidential, but since I don’t have my own name on here, and of course I won’t use the kids’ names or ages, or the name of the center, than I’m *hoping* that’s protecting confidentiality enough.  I’m not used to doing this confidential stuff.  But I really need to write about what’s on my mind.

So this local center has seven different doctors that see kids from all over, to evaluate kids for autism.  Their autism assessment is such a mess that a number of different agencies have intervened, including the place where I work.  Because their current autism assessment program SUCKS so much, a group of us are doing a new assessment program at this center, working with one of the doctors who has issues (in my opinion).  Sorry to sound like a teenager as I write this, it’s just that the more I learn about what goes on at this place, the angrier I become.  It’s just not fair to the families and kids.

So there are seven different doctors at this center, and there’s no standard procedure among them for evaluating kids for autism.  Each doctor just does his/her own thing.  And they only see the kids for an hour and a half at a time!  Families travel from far away to bring their kids here, to this center which has apparently has a very good reputation (gulp).  After being on a waiting list for all that time, and after all of the heartache and worry that the parents go through, when the child finally gets to see the doctor he doesn’t even get half a day with the doctor.  I don’t doubt the doctor’s ability to properly determine if a child has autism in that amount of time (most of the time it’s obvious when you’ve been in the field long enough), and I know that the doctors are using proper assessment tools, but in that amount of time, all you can do is give the child a diagnosis.  And these parents need a whole lot more than a diagnosis– they need to know how they can best help their child.

The program that I’m working with is trying to address this problem.  We’re a brand new program, and are only on our second patient so far, but the kids we’re seeing are getting a much, much better experience than they’d get if they just sow one of the center’s doctors.  In addition to seeing the doctor for the standard hour and a half assessment, the kids in our program also see a behavior specialist, a speech specialist, and a psychologist.  Down the road we may be adding social skills assessment as well.  And an education specialist is consulting with us.  The parents actually come to the center on three different days (at least, the ones who live close enough to do so) so that we only have to work with the children for 1/2 day at a time, so that they don’t get worn out.  On the third day, the parents come alone and have a meeting with all of us, where we give them the results of the assessment **and practical recommendations on how to help their kid.**  For me, that part of the equation is huge.

I have a friend whose son has Asperger’s Syndrome.  She brought her own son to this center years ago, before our new program was in place.  When she and her son went in to see the doctor, the doctor hadn’t even looked at her son’s records yet!  Can you imagine!?  I learned that this particular doctor tells the family the diagnosis right after doing the assessment– while the child is still in the room!!??  Can you imagine!?  First of all, you don’t talk about a kid in front of that kid.  Secondly, talking to a child about his/her disability is a hugely sensitive issue, one that is best left to the parents to do in the right way, at the right time.  So in addition to dealing with their child’s diagnosis, the parent may be faced with a child’s questions before the parent is ready to answer them.  Phew.

I could go on about the things that bother me about this center.  I’m really hoping that we’ll be able to help more and more kids with this new program.  I take comfort knowing that at least the families in our program are getting a much better experience than if they were to just go through the center’s regular assessment process.  And I’ve really enjoyed working with the kids.  Since I’m not in the classroom anymore, I don’t get to play with little kids very often, and so the time I’ve gotten to spend with these kids have been a joy.  While the child’s parents talk to the behavior specialist for about 45 minutes +, I get to play with the child.  Sometimes I’ll do some informal assessment, if needed– for example, get an idea of where the child is academically– but my favorite part is just getting to play with the kids.  As has been my experience with kids who have autism, these kids are bright, sweet, and just great all around.  They have been such a pleasure to spend time with.  And in my roll as part of this program I get to interact with the parents a lot informally.  I really like that I can be there for the families during this stressful time.  My job is to let them know what’s going on, and to guide them through the process a little bit, as their child is shuffled from one specialist to the next.  I really enjoy getting to know the families, and I feel really good about getting to help them, even in this small way.  As frustrating as the situation at the center is, it helps me to know that at least these families are getting a better experience.  I’m hoping that our program will grow and grow, so that we can help many more families.  Okay, and I’ll admit, I’m hoping that it will grow large enough that they’ll need to hire someone (me!!??) to help run it.  The other people working on this program already have full-time jobs, but I’m only working part-time, and my job will end just before Paulie’s due.  I would love, love, love to work at this full time.  It means so much to me to be able to help families.  I know that what I’m doing is small in the big scheme of things, but I take comfort in being able to do something.  And even if what I do just affects a really small number of people, it’s having a big effect on their lives (and on their kids’ lives!), and that’s something.