Image via WikipediaEvery time I teach workshops, conferences, or individuals parent trainings, I always make a point to bring to the forefront what I feel is one of the most overlooked issues in autism treatment. What are the common denominators in autism recovery? With the epidemic of autism soaring out of control, as shown on the chart to the right, we have to start focusing more on what's working and why, to insure positive outcomes for children being affected.
I recently taught a workshop where several families, service providers, and advocates were present. We covered all the topics such as biomedical intervention, dietary intervention, functional communication, behavior modification, and IDEA law & navigating IEP meetings. Most of those in attendance were on the same page, yet there were some who no matter what was said, had a reason they would not be able to do what was being suggested. No matter what objections that were thrown out, I could always come up with a feasible solution to eliminate the problem, until that is, the next one was thrown out, to start all over again. In the end, and for many differing reasons, they had convinced themselves they did not have what it takes to help their kids and could only be dependent on what could be provided.
After years of working with families struggling with autism, there are a few things that have become very identifiable trends. I've decided to start hitting these head on, as someone needs to be truthful with families, even when it's not the popular thing to do or say! Let me very clearly say, before we go any further, this is NOT meant to berate parents, incite guilt, or try to make anyone feel inadequate in any way. Most families dealing with ASD are struggling enough without us adding to that! This is also NOT a blanket statement that applies to everyone, as I can see the hair on the back of some necks starting to stand up, even as I type! What this post is intended to do is create awareness and education about a trend we see happening that is very frustrating and sad, in hopes that we can effectively address it for families in need. This post is also intended to encourage parents or caregivers to seek out the needed training to help their children and that most of you DO have what it takes to help your child make significant progress! There is NO COST training, education, and help available to take you as deep as you want to go into the education and treatment of your loved one with autism, as well as the support to help you traverse the difficult parts of the journey.
So what are the common denominators in the recovery of autism? Well, there are a few we will cover throughout the next few blogs, but by far, the most important of them all is parents who become the experts and have a can-do attitude. These are the parents who take the stance that they will do whatever it takes to insure their child has access to what is needed. They are willing to study until their eyes can no longer read, turn over every rock in the path, beg on the street corners for funding, and take on the big fish when it comes for fighting and advocating for their child. They often know much more than the physicians and professionals, and become the driving force behind the interventions for their children and the correct implementation of such.
This is especially important in rural areas, where service provision is extremely limited. Families often find themselves holding the bag when it comes to intervention, or lack thereof, yet need to be encouraged that no matter how dim the journey appears, there is help available to educate and train them to do many of these services themselves, insuring access to what is needed.
Go to an autism conference such as Autism One or DAN? and you will find hundreds, if not thousands of these families, which is why they are usually there, to dig up more useful information to help their child. Outside the autism circles though, that dynamic changes, and sadly, a small percentage of the families on the street are meeting this critical criteria.
I had a reporter ask me some time ago what our recovery rate was. I told him I was not really able to tell him the way he wanted to know. He was looking at statistics only. How many families have you served total and how many recovered kids do you have? Only it's not that simple. If we say we served 100 individuals (just grabbing easy round numbers here) with autism, 10 have made significant progress, and 4 have recovered, that would not look so good. Yet it has to be realized that those numbers are not quite as cut and dry as that. Out of those 100 individuals, typically only 10 or 11 of them actually did even a part of what was suggested. So needless to say, 4 out of 100 would not really be a fair statistic.
What we have found is that an enormous percentage of families fail in recovering their children because they get overwhelmed and don't follow through. Now before I get any angry letters from those of you who have busted your butts and your child has still not progressed the way you would like, let me say there are definitely exceptions to this rule, so this is not a blanket statement. However, from what I have seen first hand, the majority of the children I have worked with could be doing significantly better if the parents were driving the bus, rather than traveling as passengers. In all fairness, many times the parents are spectrum themselves, and already overwhelmed and in shut down mode. That's not their fault, yet it often impacts the ability to provide appropriate and consistent interventions as needed and stay the course. Far too often we see families give up just short of what would be a breakthrough, if they had just continued. Then the interventions themselves, such as biomedical, dietary, or behavioral interventions, get the bad wrap for not working, when in essence they were not utilized as directed and often stopped! In contrast, those who did follow through see remarkable results in most cases.
So where does this leave us? In a rather uncomfortable position, I'm afraid. In the workshop I referred to above, I decided to take the pro-active approach to hitting the problem head on. After numerous attempts at overcoming objections, I finally closed the conversation by saying the following:
"Here's the bottom line. Kids are recovering from autism every single day. We know every child is different and every child needs a specific protocol designed to meet the particular and individuals needs. But we also know that for every time we hear reasons why something can't be done, we also meet some parent with the same situations doing it very successfully. Yes, it's very difficult. No, it's not a walk in the park. Often 3-6 years of intensive intervention, or more, can be required to get these children where they need to go and that's devastating emotionally, physically, and financially. Yet, it's also very temporary and if it yields incredible improvement or recovery in the end, is that not worth it? We can do anything we choose to if we set our minds to it, make the decision to just do it, and we realize it's not forever, no matter how uncomfortable it is. What I still have difficulty understanding though, is that many will not commit to even 6 months of hard work to improve a child, yet by default, they are committing to a lifetime of work and dependency if these children are not treated appropriately. I am not trying to place blame or cause guilt, yet it has to be pointed out that this is a choice, and by not making it, in essence, you have chosen."
Yeah, I know. Kind of a hard line, but here's how I am looking at it. Someone has to tell the truth! Doing nothing yields nothing. PERIOD! These kids don't get better by osmosis, it takes a tremendous amount of time and hard work and there are no shortcuts, at least not yet! Though many get very angry with me when I tell them what they don't want to hear, eventually, many of them will come to terms with what has to be done and move forward. Sometimes in days, sometimes in weeks, and sometimes it's years. The hard part for me is knowing time is of the essence and these remarkable children don't have time, which is why I have become more direct and to the point. Hopefully, in hindsight, most will realize I'm trying to do them, and their children, a favor that could have significant impact! If it saves just one child, it's worth the risk of making someone mad!
There is also the issue of finances, that were brought to my attention today by a reader. I honestly don't think most realize that they have access to the tools, education, and training needed to provide many of the sought after services themselves, and often more effectively! This also alleviates the long-standing problem of bankrupted parents, mortgaging everything they have to provide for their child.
Many seek services through school systems and/or private insurance, yet when they have difficulty accessing the services in the amounts needed, they feel discouraged, defeated, and often give up, not knowing what else to do. Our intention is to encourage those of you finding yourselves in these circumstances that there is HOPE! Though it's not uncommon to think we don't have the skills or expertise to make a difference working with our children, the truth is that many parents have dramatically improved and/or even recovered their children by taking charge of the treatment and interventions, and gaining the education necessary to do much of this work themselves. The process is often quite wobbly in the beginning, yet with time and progress, with positive visible outcomes and increased amounts of education, parents rise to feeling empowered, understanding what has to be done, and figuring out how to do it!
We live in a time that unfortunately is putting the bulk of the responsibility (both time and resources) on the backs of the families, who are already strained beyond belief. If we can identify the characterists that are common among those who have recovered children with autism, then perhaps we have somewhat of a map, to encourage parents to gain these skills, that they might do the same!
So, in closing, what are the main characteristics of the parents who succeed in this challenge?
1) Positive attitude and determination that they will do WHATEVER it takes to help their child and they will NEVER give up!
2) Becoming the expert and a research maniac! Reading everything you can get your hands on and becoming more of an expert that those who are treating your child! Let's face it, no one knows your child as well as you and if you don't know what good speech therapy looks like for a child with autism, how do you know if it's being done correctly?
3) Driving the treatment bus! Be in control of your child's treatment program, in all areas. Know enough about all your child's programs to be able to train the professionals and tweak programs that are not quite right. If you are depending on the school system, the physicians, or the professional service providers to recover your child, you are in BIG TROUBLE! Even the most skilled providers are being led by YOU! It's also critical to point out that continuity across all settings is paramount. Though I advocate for an excellent school program and interventions, at the end of the day, I treat it like glorified daycare and make sure that I am doing everything that needs to be done at home, just in case!
4) Involve yourself with other like-minded parents, who are also the experts and driving their child's treatment bus! I can say without any doubt that I have learned more from parents along this journey than from the professionals, and more often than not, I ended up training the professionals to work appropriately with my children!
We will look at some of the other common denominators to recovery in autism in our next blog post. This is an evolving blog, and will cover the most pressing issues we see within our practice of treating children at the Autism Solution Center, Inc. If you have suggestions for a topic or questions you would like to have answered, please email them to email@example.com.