Saturday, November 19, 2011

The Wild World of Autism

I've been a bad blogger lately... a very bad blogger... it just seems like there has been so much going on lately, that by the end of the night, I just don't have the energy to put together any sort of coherent thought- and forget about writing it down! I think a big part of it has really been a sort of mental shut down after Ellie's Angelversary. It's been a horribly long year and I think your body and mind can only handle so much before it just takes a little sort of vacation... I'm not saying I've had any kind of mental break or anything, but I just found it easier to check out of this little world for a while. It was also very important for us to put some time and energy into other things going on in our lives.
 Max was given an educational diagnosis of ASD (autism spectrum disorder) at about the same time Ellie passed away. Double whammy. Over the last year, we have done as much as we have been able to wrap our minds around to help Max. We got him into the ASD program in local school district and private speech and OT twice a week. These people have been true God sends- we have learned so much from them. Max has made incredible improvements in the last year, but with ASD, there are a million and one possible treatment options...
 Over the last year I have spent some time researching other options or complimentary treatment options. There is ABA therapy, RDI therapy, diet options, biofeedback, chiropractic care, on and on... The problem is that there is little research on most of these proving whether or not they are effective, therefore insurance isn't likely to pay for it. Also, and this is a very important piece of the puzzle- every single person with autism is different. That's why it's a spectrum disorder. ASD means something different for everyone. So, just because one course of treatment worked for one person, doesn't mean that it will work for another. It makes it very hard to decide what is best for your child.

The ASD world is one where everyone has an opinion, but doesn't necessarily know the right thing to do, place to start or how to help. Yeah... Because Max only had an educational diagnosis, we needed to get him a medical diagnosis so that we had a higher chance of insurance paying for treatment options. This is NO easy task... Last May, I filled out a couple hours worth of paperwork, had his teacher fill out a super long packet, collected all documentation of any testing he had done up to that point at sent it in to the U of M at their developmental behavioral and autism clinic. I was promptly told that the wait would be six to nine months to be seen. We finally got our appointments in the first part of November- they originally tried to get us to come in on Oct. 24th and 25th! I laughed... There were four appointments..
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What a nightmare! The first day consisted of me putting Max in the car at 7:00am to sit in traffic for an hour and a half. The directions sent to me by the clinic were completely wrong due to construction. There were students walking to class everywhere. There was only a few parking spots left in the ramp. I knew we were not to be late or they would cancel the appointment. So with minutes to spare, I am hauling ass down the street with Max in the stroller, we find the building (no thanks to more crappy directions!) only to find that there is only one accessible entrance- on the other side of the building! I say screw it!, kick Max out of the stroller, make him walk up the stairs while I haul the stroller up... We fly upstairs and into the lobby with five minutes to spare in the "ten minutes late" deadline... What followed was three hours (yes I said three HOURS) of developmental and cognitive testing on a three year old in a tiny room with two strangers and two small windows...
It was awful. Max was stressed, I was stressed. Three hours is way to long for a 10 year old to sit in a chair and focus on a test. No shit he quit cooperating and didn't pass. He totally checked out! Thankfully, we've been through the standardized testing process before and I knew what was coming. Max did do tons better than he did a year ago when we did the initial testing. A year ago, he just screamed. This time, he participated the best a three year old could...
A week later, with Dave along this time!, we went back for the last three appointments. The first appointment was three more hours of social skills testing. Less stressful than last time because it was more play, but Max's issues became totally obvious. It's hard to watch, especially because it's a standardized test and we can't say anything to help him. After a lunch break, we met with a neurologist for a very short appointment. Thankfully, Dave's mom came to take Max home while Dave and I went to the last appointment.
During that appointment, we got the testing results and treatment recommendations. We had been told by several people to expect a certain treatment recommendation and it was exactly what they told us. They said they would classify Max as having high functioning ASD. They suggested that we discontinue his private therapy and time in the ASD program with the school district. They want us to put him in ABA therapy for forty hours a week. They want us to send our child somewhere else for 40 per week! Ha!

Quick ABA therapy description... Basically ABA therapy (Applied Behavior Analysis) is behavior modification therapy. It's training the child to keep good or acceptable behaviors while discouraging negative behaviors. Programs are generally 20-40 hours per week. This is because the program is only effective if the ideas are continually reinforced... There are options for in-home ABA therapy. But this means having a stranger in your house for 20- 40 hours a week micro-managing your child.
The effectiveness of ABA therapy is well documented. Some insurance companies pay for it. But most don't. Including ours. ABA therapy around here- typically runs $150 per hour. That's $6000 per week, $312,000 per year. Who can do that?! There are certain forms of government assistance that will help pay for this treatment, your child qualifies with just their diagnosis but you pay based on what you make... It can take months to qualify for this assistance, only to find out you make too much to afford it. Seriously, we pay taxes but don't get to use the services we pay for?!
Anyways... obviously we would do whatever we need to to help Max. But we aren't really convinced that ABA therapy is the right thing for him. A lot of the studies supporting ABA therapy do not specify at what level their subjects are functioning at. As I said earlier, each person with ASD is different, so in my opinion, that makes a difference in whether ABA therapy can be generalized to an effective therapy for everyone with ASD.
Max is smart. We were told that he is at average cognitive level, if not a little higher, than others his age. When he gets something, he gets it. It does take repetition. In this case, ABA would be helpful for him. However, Max does a lot of scripting with his language- meaning he repeats what he's heard on TV, continually says it and uses it as his way of talking... For him to be in the non-stop repititive environment of ABA therapy, seems counter-productive...
And if he is always in the same environment, how is he going to learn to generalize what he's learned. Just because he can do something within our house or at a center, doesn't mean he could apply it to the real world... ABA therapy is a lot of "DO THIS" and "GET THIS." Which is great at first, but the real world isn't always so predictable. And Max has a very hard time with anything that doesn't go exactly the way he anticipated. I don't see how putting him such a controlled environment could remedy this problem. Right now, he goes to two different places for help, plus home. He works with different people who have different approaches... I feel like this is much more realistic and in the end, more beneficial for him.
Plus, he loves school. He loves therapy. We have seen incredible changes since he started less than a year ago. The people that work with him really care about him. They are warm and welcoming, and I completely trust them with him...

So now what?! The "experts" tell us completely the opposite of what we believe...

But, Dave and I are really the experts. We know Max. We are with him everyday and know how he learns best. After being a nurse in a pediatric hospital and working with kids who have long term illnesses, I learned from those parents, that you have to advocate for your child. Yes, the doctors and nurses went to school, but as a parent, it's you who knows your child. There is a lot to be said for a parent's instinct and gut-feeling. After everything that happened with Ellie, this only became more obvious. Having a special needs child means that we are the ones that speak for Max. Yes, we have had more specialists in our lives than we ever anticipated, but I've learned that I know best.
So for now, Max is staying where he is. We are going to look into part-time in-home ABA therapy for when he is done napping in the afternoon. We will keep looking into things like diet supplementation, social groups, horse therapy, etc. We will keep taking all the information and deciding whether it is best for Max.

I guess my point in all of this is, just because you know someone with autism, doesn't mean you know another person with autism.. I had coffee with three other moms from Max's school the other day, and we were talking about our kids. They are all in the ASD program- all on the spectrum. But they are so different. It is so difficult and exhausting to navigate through the autism world. No one can tell you what's best for your kid. It's confusing and you constantly worry if you are making the right choice. Having autism is not like having diabetes. There are no clear symptoms, there are no clear treatments. It's kind of a just a big cluster...

7 comments:

ccc said...

Yes, I agree that you and Dave are the experts on your son. How can they just decide to completely change what has been working for him??
And, I remember Ben's initial visit to our developmental ped a couple yrs ago---why do they have these kids (most who have social anxieties)go into these small dr-looking rooms so that the strangers are very close to the kid?? Ben hated it then, and I KNOW he is going to hate it when we have to go back. I just hope he cooperates a bit when we go which should be in a few months since it takes that long at our place to get in(ours is u of M too-but,Michigan).
It's good to hear that his cognitive skills are so high!

Deanna said...

Oh Tiffany, you are the absolute best parents! Thank you for being so open and honest. It helps us know what parents are going through. ((hugs)) I applaud you for making your opinion on Max's learning the most important. You know him best! I agree with the gut feeling part, very very true.

NewYearMum2.blogspot.com said...

You are such a loving and wonderful mum for both your darling little ones... you know best and follow your heart. Love to you always xoxo

crystal said...

I know that you and Dave will make the right decisions. Praying for you along the way. Max is handsome. I love his pictures!!!

Beth said...

Tiffany,

Good for you for knowing your child and doing what's best. I know its hard not to second guess yourself sometimes because of what the "experts" say. I am an SLP and I absolutely abhor ABA. Like you said, everyone has an opinion ;) Your assessment of the repetition being difficult for max given his scripted behaviors is spot on. A friend of mine's nephew did ABA and he would repeat and repeat the phrases he was taught in a very weird non-appropriate way. I think the theoretical basis behind ABA is extremely flawed. It feels like dog training to me, and it is the opposite of meaningful natural communication. When I see tapes of ABA therapy (which are presented to me as a SLP as a "really good example" of it being done well), my stomach churns. Cornering a kid and firing off flashcards at a rapid rate just seems like torture for any kid, let alone a kid with sensory issues. Another tenet of Skinner/ABA is this idea of "extinguishing" inappropriate behaviors. Those behaviors serve a purpose for that child (sensory, etc.). To just train them out of them without giving them a replacement behavior that is more socially acceptable and serves that need seems inhumane and counter productive as whatever stress relief the stim provided is now gone and the children seem to meltdown later, etc. I know only a little about it, but Floortime (which seems like most parents are either ABA or Floortime fans)seems much more natural and nurturing. Also, Hanen has a program called MORE THAN WORDS which trains parents how to work with their kiddos. Hanen stuff is great and it teaches the parents how to be the therapist. So much smarter use of time than 30 mins. here or there. It is all about following the child's lead and much more natural than ABA.
Does Max have any GI issues other than the reflux? GFCF might be worth trying if so. I know a lot of people are down on it, but I've seen some of my kids make major improvements. Like you said there, no one kid on the spectrum is the same. However, if he did have GI issues like constipation/diarrhea/etc. I might look into it. Maybe the reflux is enough of a sign to try?? Again, just a thought. I know everyone has THE answer, and it gets old hearing it ;)
Big hugs to you on this journey. It seems you don't know anyone to tell you this, but just in case, I'll say it again. You are an amazing mother. Max is lucky to have you.
XOXO
B

SG said...

I'm always impressed by your energy and commitment to your children.

Beth said...

argh, I meant "you don't need anyone to tell you this." my other sentence makes no sense. the anal retentive in me needs to make this known, even though you can probably figure it out. haha.

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