I recently had a parent refer to the many needs of her daughter in this way: “It’s like there are three floors of the house burning – where do you start and which level do you fight the fire on first? As I am a fan of visual imagery and metaphors, I’d like to use this as the springboard for this post on priorities in treatment. Keep in mind that I know absolutely nothing about fighting fires, so please no comments about the logistics of real firefighting in relation to my metaphor!
When a child has autism there are many areas of need to consider. The pervasive nature of the diagnosis leaves little unscathed in terms of development and functioning. The extent to which each area of need is impacted varies, but it’s safe to say that all children on the spectrum are affected by their autism in numerous areas. There are the communication problems, the social interaction problems, the restricted behaviors, rigid thinking, etc. that come from having the core deficits of autism. Then, for many kids on the spectrum, there are the co-occurring problems to address, such as impulsivity, feeding problems, sensory processing problems, motor deficits, academic problems, etc. The list can go on and on depending on the child and it can, indeed, feel like all three floors of the house are burning.
Once you have identified the condition(s) that require treatment, the question becomes what to treat, when to treat it, and how to treat it. There are some options to consider:
• If all three floors are burning there may be a tendency to decide to try to throw a lot of water on everything in an effort to put the entire fire out at once. I have seen parents do this and the result is generally unfortunate for everyone involved. What ends up happening is that the parents get completely overwhelmed with trying to address everything at once with comprehending a bunch of different therapies, driving all over the place to get to therapies, having all kinds of people in the home, paying for everything, etc. Trying to treat everything at once is a recipe for burned out parents and burned out kids. It’s also a recipe for a burned down house because by throwing water at the whole fire at once you will not be able to concentrate enough in one area to make a real dent in the fire. You might keep the fire from spreading, and you might reduce the flames a little on each level, but the fire itself will keep on burning on every level.
• One could also decide to concentrate water on the area that seems to be the most obvious – the top of the house where the flames are shooting out. This can be thought of as the approach of treating the most obvious problems first – my child isn’t talking, doesn’t look at me, doesn’t know how to make friends, and/or doesn’t behave normally so we’re going to treat those things. That seems like a logical plan on the surface, but the problem is that it is the equivalent of putting out the fire from the top floor first. You might save the top floor, but there is no foundation to hold it up so what you end up with is part of a house that is salvaged, but can’t support itself. This is what happens when we choose a skill-based approach to treatment that does not focus on core developmental issues that need to be addressed in autism.
• A third approach is to concentrate efforts on the base of the house first by putting out the fire there, and then working your way up to the higher levels of the house. This approach is the equivalent of working on the foundational developmental skills, abilities, and milestones that must be achieved in order for a child to make long-term developmental progress. It can be a difficult choice to make because it feels like the things that are most obvious are not being treated right away. It can feel like too much of the fire is allowed to burn while efforts are concentrated on one area at the base. However, this is the choice that must be made for long-term gain. It is in focusing on the core deficit areas of autism in developmentally appropriate and specifically targeted ways that we move forward.
As parents and professionals we have to recognize that there is only so much “water” to go around – only so many hours in the day, energy to expend, knowledge that can be absorbed, money that can be spent...the list goes on. I’d like to propose the idea that it is not necessarily about getting more water, it is about how that water is used.
• It is about understanding exactly what needs to be treated and prioritizing those needs so that a treatment plan is developed to work in everyone’s best interest, without extending beyond resources that aren’t there.
• It is about understanding that by treating foundational developmental issues many other problems begin to fall away. By taking a bottom-up approach we address areas of development that snowball and create change across the board in the way a child thinks, communicates, and behaves.
• It is about prioritizing family health above all else and recognizing that if the needs of everyone in the family unit are sacrificed in the name of doing “more” to treat autism, then in the end everything will be lost.
• It is about knowing how to make the most of the time, energy, and finances you can in targeting the core issues of the child’s disability.
• It is not about running around to try anything and everything, and making yourself, your child, and everyone around you crazy, tired, cranky, and broke in the process. That helps no one in the end.
Next week I’d like to extend this discussion to the specifics of prioritizing needs from a developmental standpoint. But for now, think about how you are prioritizing the needs of your child. Are you able to rest assured that you are targeting what needs to be targeted for now, and that everything else needs to be left for later? Do you have a strategy that is allowing you to put out the fire from the source instead of blindly aiming water at the obvious flames? Do you have a good balance in your family where autism is one part of what you focus on as a family, and not the thing that takes up everyone’s time, energy, and finances? These things are critical to consider, and good to do a gut check on every now and then.
Until next week,
Nicole
1 comment:
One of my daughter's early intervention teachers gave us some good advice. She told us to think of the plate spinner act at the circus. He puts only one plate on the stick at a time. Once he has a plate up and spinning, he can maintain quite a lot of them, but he only puts one plate up at a time. The teacher told us to pick one "plate" and get it in the air before we tried to lift another. From dietary intervention to biomedical to RDI, we parents need to remember to start one plate at a time.
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