Monday, October 13, 2008

New Point of View

The things I thought I knew about Autism have been completely changed forever. I really thought I had a good understanding of how to help my sons. What they needed in order to make them happy. My thought was that if I could simplify their life by keeping things as routine as possible, it would somehow help them and help our family. I thought if I could create challenges, that had a minimal chance for failure to induce that feeling of success, that it would somehow make them successful at other challenges.

When you think of Autism in terms of a broken brain that needs remediation, it will completely change your point of view. Cut out your feelings about the surface "behaviors" we are trying to curb. Cut out the frustration we face with our children in getting them to do the simplest of tasks. Cut out the thought of making life scripted and black and white to make things "easier" on them. After all, would you put a band-aid on someone that snapped their femur? That would be ridiculous, right? Why do we think that putting a band-aid on a broken brain will help?

My obsession with his flapping and stimming. My thought that if I just talked louder and repeated myself when they were having trouble working through a problem, that they would eventually understand and work through it. My thoughts that they were really just ignoring me or they are lazy when I would ask him to do something and they would just sit there and stare at me. My constant feeling that I was a failure as a parent because I couldn't teach my children to do a simple tasks like turn on the shower, tie his shoes, button a shirt, or use a fork. I thought that if I just exposed them to enough social situations that they would eventually learn how to socialize. It seems ridiculous, right? To someone that doesn't go through these daily struggles with a child with Autism (or delays) it would probably sound silly. However, do you ever notice that when someone doesn't speak english and comes in contact with a typical American that is trying to communicate, they think that if they just talk slow enough and loud enough they will understand?

As a parent of two children on the spectrum, I have been through many different challenges with them. We have seen many improvements in their behavior, in their self care skills, in their ability to use words and express their needs. I am very proud of the progress my children have made. I am not saying that a child with an ASD can't have a perfectly great and happy life without remediation, much the same as someone who can't walk, can't see, or can't hear or has some other type of handicap can't have a perfectly good life. But, if there was something that we could do, that could really help, wouldn't you want to try it? After what I learned this weekend, I really want to do what I can to improve on what we are already doing to help our kids.

As many of you already know, I went out of town this weekend to attend an RDI conference in Los Angeles. I would encourage those of you with children on the spectrum to investigate their website for yourself. I am not one of those people that is easily "sold" on a treatment for kids with Autism. I am very skeptical about some of these crazy sounding treatments. As I said once, and I will say it again, do your homework on anything and everything out there. If you find something you think will work and is safe for your kids, go for it. I am not trying to sway anyone one way or another.

What I learned this weekend, just really hit home for me. It touched on many of the daily struggles we go through with our children and the way they begin to treat these things is a very common sense approach to things. This excerpt was taken from the RDI website:

Think about your dreams of a typical day in your child's future. Do you hope someday, he or she will:

Not only talk fluently, but engage in genuinely curious conversations?
Delight in a true friendship?
Feel a sense of pride in being able to contribute to his or her community?
Enjoy the excitement and comfort of a boyfriend or girlfriend and maybe even get married and have children?
Feel capable and confident living an independent lifestyle?
Experience the satisfaction and rewards of successful employment?

The goal of the RDI® Program is to provide the majority of people on the autism spectrum with the potential to attain a true quality of life.

Why "social skills" and behavior modification are not enough:

Prior to the RDI® Program, most intervention approaches taught children on the autism spectrum to perform scripted behaviors with limited value in many real-life interactions. For example, a child may be taught an opening gambit when approaching another child on a playground. However, if the rehearsed remark does not lead to acceptance, or even if it does, the child is left with no ability to participate in the spontaneous, highly fluid peer interactions of even a simple playground environment.

While they clearly have benefit, even the most widely used and most intensive intervention methods have not demonstrated their effectiveness in producing a high quality of life for people on the autism spectrum. We do not know whether any intervention programs, even those that claim to be "proven," actually lead to the child's ability to develop friendships, live independently and obtain satisfying employment. We all hear about children who are "recovered" or who "look normal" but we never really know what happens to them in real life and whether the "miracle" of their progress was really due to any specific program or treatment.

We believe that to produce successful adults, a clinical intervention program must develop effective ways to address the debilitating core deficits of autism. These core deficits: rigid thinking, aversion to change, inability to understand other's perspectives, failure to empathize, and absolute, "black-and-white thinking," continue to plague people on the autism spectrum throughout their lives.

The problem is, faking never ceases to be work.

Why language and IQ are not enough:

Scientists find that even those children who speak well and are high achievers in school, are at high risk for failure in life.

The largest study‡ ever conducted of high functioning adults with Asperger's Syndrome and Autism was completed in 2001. The researchers followed hundreds of young adults on the autism spectrum who had high IQ's and good language. 50% of these bright individuals went on to higher education after high school. Yet, at the time of the study:

Only 12% were employed
Only 3% could live independently
Over 65% had almost no social contact outside of their family
None were married or involved in a significant emotional relationship
Over 75% of children currently diagnosed with an Autism Spectrum Disorder (ASD) have at least average intellectual potential and adequate language development, placing them on the "high functioning" end of the spectrum. Yet, as this and other studies clearly demonstrate, their academic achievement and language proficiency are not sufficient to attain a quality of life. Despite significant progress in evaluation and treatment of ASDs, the prognosis for quality of life for people on the spectrum remains poor.

Yet the myth that language and academic achievement equals success continues to be communicated even by some "expert" professionals. The following page illustrates just a few of the many misconceptions that continue to spread.

For more info, I encourage you to investigate their website


~Mama Skates~ said...

i've checked out their site already - VERY u suggest i start with the "going to the heart of autism" dvd?

baby trevor's mommy said...

You never cease to amaze me! Have I mentioned that I LOVE your passion for your kids!'re an amazing mom...and friend...and right now I'm just so darn proud of you! I can tell you learned SO's dripping from you! I don't know Trevy's future...but I do know where to come for encouragement! And a good solid shoulder if I need it!

Do you have Kay's results yet??? Scoop us!


Shanna Grimes said...

Sharon, can't wait to share more with you ;)

Danielle, Thanks. *blushing* I am really excited about the RDI because I think it will really help Javi. I think it will help Ethan too, he does have some issues with certain things too. Javi really needs some help if he ever truly wants to be independent. So sad to come to terms with that. It gets harder when you are looking half way down the barrel. Javi's almost 9, half way to being a legal adult. I think until recently, we were just living day to day, trying to get by, but the fire's lit now. Time to take action!