Although Autism has been around for a long time, the treatment is still being figured out. Autism is not something they can determine in the womb, allowing parents time to plan ahead. It springs up on you. You may go years with an inner battle of “maybe he is just delayed” or “maybe he will grow out of this”. There is no blood test (yet), no chromosome marker (yet), no concrete biological method to find it (yet).
There is some new fangled idea that you can determine Autism as young as 18 months old through the movement of their eyes. Perhaps.. I won’t knock it, but it still doesn’t give the concrete proof so many parents are looking for. For us, the diagnosis was a loooong path with several unfortunate turns. It involved several psychiatrists, an old falling apart book, some old toys and a simple statement that “he is severe”.
But what happens after the diagnosis? We stumbled out of that office with a 20-page summary of our child and a final page that says he has Autism. For life.. And that’s it. There were no “next steps”. No literature to keep us up at night. No “this is how your life will be from here on out”. No advice, not even a hug.
We went crazy online, found a bunch of stuff (fake news included I’m sure). I read some non-fiction books of other families beating the odds. The one thing that continued to be a theme in all of the material was you needed to catch it fast for any hope of “beating” it and kids needed full time ABA therapy. Well, we’d missed the first one due to all the issues we had with obtaining the diagnosis. He was 5 years old. The “magic” age where services dry up and the school becomes responsible for “fixing” your child.
So we decided to try ABA. This stands for “Applied Behavior Analysis” which means a whole lot of nothing to a newly diagnosed family. I honestly still couldn’t tell you exactly what it is meant to do so I’ll leave that research to you. We signed up, and after a 9 month process, we were approved for the full amount (25 hours per week). We gave it a shot, put so much time and effort into it. Had people in and out of our house all through the week. Had a grumpy boy that really hated being pushed to do anything. It wasn’t always rosy and we clashed with a lot of the methods. We have been through three companies over the course of the last 6 years. Think about that…
Now, there are two schools of thought when it comes to ABA. Some people wholeheartedly believe this is the ONLY method that will work. That the reason it doesn’t work is people aren’t doing ENOUGH of it. On the other side of the tracks are those that believe it adds too much pressure on a child, that the teaching methods are not conducive to the Autism brain. I’ve even seen a newer thread that ABA is trying to “fix” something that is not even broken.
I think we fall somewhere in between (as usual…). It definitely was not always a positive experience. We ran into companies that were more into it for the funds they would receive rather than ensuring progress was made. Therapists were a revolving door and we would spend more time “building a relationship” than completing goals. But we also saw the tenacity to work through issues like being able to sit at a table longer than 2 minutes or to take turns playing a board game together. Improvement was gained, mostly seen in hindsight.
It took us 4-5 years of floundering around to come up with our perfect recipe (and it still isn’t perfect). For Z, there needs to be variety. He already spends 6 hours doing “work” at school, expected to sit at a table and follow directions. What he needs is to work on all of these things in different scenarios. I feel his mind has to be triggered in some way. Triggered to learn, triggered to come back from a meltdown, triggered for focus. This trigger needs to be large enough to pull him out of his world. Doing the same thing over and over just won’t work for him.
So back to the internet we went. By this point, there is a bit more knowledge on the topic. More methods have been tried and given the thumbs up. Is there a roadmap of exactly what steps to take? No, we’re not there yet. It is still very much left on the parents to find these therapies and most have a huge waiting list due to the lack of resources/acceptance. And forget about insurance, they do not see any of these as viable therapies and will not cover it.
We have done a variety of approaches, some things worked, some didn’t. We’ve done horse therapy, swimming, private speech, a company that does “outings”, surfing, skateboarding, art, music…. We did bring ABA back when behaviors got too much for us but at a strict minimum of 2 days a week (much to the company’s dismay).
Something that has stuck with me and proven that our varied approach tactic is right for us was when we first started Music Therapy. Now, I am a musician, my hubby dabbles and enjoys it too. Music has been in my life since I can remember and I started hearing about it being used as therapy. Interest piqued, I set up an assessment for Z. When I set it up, they said 15 minutes of talking to me and 15 minutes of Z “exploring the instruments”. In my mind, this was going to be so much fun and Z was going to love this! My friends, I could NOT have been more wrong.
Z had a meltdown, the worst I had seen up to that point in his life. I’ve seen him punch his head and chin. I’ve seen him throw things and even hit others. What I experienced in 15 minutes of that assessment was beyond this. He yelled, cried (real tears), pounded his head, punched the ground, tried to throw the instruments, hit the therapist… Just full meltdown mode. After all that drama, she is taking her notes and trying to talk to me. I’m desperately trying to calm Z down and pay attention at the same time. He’s just lost. He became obsessed with the guitar and kept going for it. I tried to stop him and literally could not. He was so big and strong at that age that we were an equal match and I actually started laughing at what we must look like wrestling. Then I was holding his arms so he would stop hitting his head and he seriously head butted me. Like, full on pulled his head back and smacked me right in the lip. I was totally shocked (and hurt).
Needless to say I looked at the chick and said “well, that didn’t go well… guess this isn’t for us”. She was totally calm despite the tornado that just hit and simply said this is the EXACT program for him. It is going to be hard and his reaction was normal. But it is what she said next that has stuck with me..
She talked about how those with aggressive behaviors tend to rule their world because everyone is trying to avoid this behavior. He knows we are trying to do this so when he doesn’t want to do something he immediately becomes aggressive. She further explained music travels along a different neuron in the brain so with many people they can learn things through music instead. Ever listen to music while studying or working and you seem to remember the content better? Same idea. Music Therapy teaches him speech, OT, calming techniques, and social skills all through the use of music.
That was powerful and why we continue to try different things. His brain works different, he will learn differently than typical children. He will play differently, he will get attention differently. There is a saying of “Different, Not Less” and this can’t be more true. Z is not “less” because of his meltdowns, his lack of skills. He is simply different. And our job is to meet him where he is at.
Do I think they will ever have a “tool kit” for the treatment of Autism? Perhaps, but maybe not in Z’s adolescence. Maybe what we are doing by pushing for a variety of therapies will set the stage for the next group. Maybe insurance will cover these other therapies. Maybe families will be given the proper guidance on Day 1 of the diagnosis. Maybe they will find the identifier in the body so we can determine the presence of Autism inconclusively. We live for these “maybes” and in the meantime do the best we can with what we are given.
To all of those who are just beginning their path, hang in there. You are doing great. Trust me..
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Tilted Axis 