Happy birthday to my 19 year old daughter this morning!
Language is our way of communicating thoughts through symbols of symbols. It is not perfect but this is our system. My first sentence was probably understood well enough to know it is not crucial but at least an acknowledgement of an event.
Labelling a person with the term “autistic” probably has more meaning to us and the implications can be significant. I wrote a really long article this morning about using identification and labels from the standpoints of the parent, teacher, therapist, the child and others but now I am wondering if it is worth typing up. You have probably heard it all before so I think I will just skip it and get to the part I really feel in my heart:
Every person is a child of God.
At the end of the game we call life, the roles you have played are insignificant.
The work you have done, the money you have made, and your physical appearance are all incidental.
The love you have felt, the love you have shared, and the love you have allowed is eternal.
See the light in others to see the light in yourself.
Love needs no labels.
Love needs no words.
Love is truth-nothing else Really matters.
PS I have decided to add my rant just in case someone is new to this game and may benefit from some common thoughts:
“To be or not to be? ” We are all more alike than different. The vocabulary and terms we use guide our thinking, our expectations, and even our behavior.
I had a wonderful second grade teacher as a child. She used cooking in the classroom and it was great fun. A few years ago, I was talking about this experience and my mom mentioned that she remembered her as disabled and only had one arm. Funny, I totally don’t remember that at all!
This is the issue I have with labels and categorization. They come with predetermined meanings and often become a box that we use to see a person in and even molds the person by these meanings.
As a teacher, we are mandated to follow accommodations on IEPs. We go to trainings and listen to experts tell us how to best “differentiate”. Sadly, those words like “aspergers, autism and behavior plans are red flags for really meaning “this child has major issues and the parents will probably blame me so watch out for a lawsuit“!
Most teachers are trying to survive but planning to meet the standards as well as trying to make some fun in learning and when you throw in children that need totally different plans things get very difficult to manage. Then you must consider all of the behavioral issues of the classroom and it really becomes a multitasking fiasco.
From the standpoint of a parent, it hurts to hear that your child has been categorized as permanently neurologically damaged. Guilt, fear, worry, and exhaustion are a few of the feelings I remember.
I had the honor of meeting Dr. Tony Attwood in Florida a couple of times.
One conference was hosted by a school system and the other was hosted by private autism organization. The one with teachers was a pleasant mix of people chatting about where they would go for lunch, who their sub was and an occasional question about accommodations.
The conference with mainly parents was a silent crowd hanging on every word Dr. Attwood said like starving wolves. I saw the pain and desperation in their eyes and felt very sad to hear stories of parents giving up and committing their children to institutions when they could no longer handle them. Dr. Attwood asked me why I came to both conferences since it was the same lecture. I could only think of one word – validation. His words rang true with the crowd as he discussed the most common issues from the position the parents lived with. His examples unified the audience in a way that is hard to explain. If you are not familiar with Dr. Atwood, I would highly recommend his books. He knows more about aspergers than most “experts”and he has passion. He favors cognitive behavioral therapy and is dedicated to finding working solutions. He doesn’t hesitate to reprimand schools or therapist that don’t care or listen to the real needs of our children. One example is his view on homework. He basically says that home is our children’s castle and they need downtime. Parents love this because they know the struggle and fight for hours and the disruption in their homes all over tedious a usually nonproductive homework. Teachers usually do not understand this. So, here we go with the resistance and power struggles.
The real trouble with all of this is that there are no clear-cut definitions or meanings. We get in the ballpark with our labels but they must be used loosely and never as the entirety of a person. In applied behavior analysis,we look at behaviors not at general identifications. It is a more scientific and objective approach. It relies on observable behaviors and data rather than generalized language. The label matters not.
The sad reality is that our kids may need the protection of the “label” and the laws written for them. You will probably run across a teacher, counselor, administrator or other person that can make your child’s life worse. There are people in this world that love to control others and refused to learn. Here is where I see the value of a safety net to fall back on for protection from these types. However, you never really win with them. They may agree to an IEP but will sabotage every plan to prove how right they are. It is best to stay away from that type as much as possible. You can use legal grounds and resources to defend your child’s rights but this is very draining and stressful. In these situations, “labels” mean a lot.
More importantly is your labeling of your child. For me, I started to see some biological issues that my son had. I learned to reduce triggers and situations that overloaded him. However, over the years these have lessened. You were constantly having to refocus on a moving target! He is not the same as he was 7 years years ago.
In summary, I would say the labels use for identification are a beginning of a very crude terminology that sends you in the right direction but does not tell you everything you need to know.
I tend to describe my son as a “person with the diagnosis of aspergers”. He has some characteristics that are common with that definition. It has helped me to release guilt of blaming myself for certain behaviors he exhibits and to look for functionally equivalent replacement behaviors to teach and reinforce. This term has protected him from certain people. It has given him a few advantages but it has also been a challenge for him to fight against. He used to ask me if this meant he was mentally retarded and looked to me for guidance in what he should expect out of his life. I told him that he thought differently than the average person and he may have to find different ways to learn but that he was a human being like everyone else. I think he finally believes me and has gone about his business learning how to be successful with people even if it has not come naturally. He does not want the attention of being different so he tries to blend in and he has found this reinforcing.
My advice would be to use labels generally but take care not to assume anything. We really don’t know much at all about autism. We really don’t know much about anything!
(For IEPs, 504s and insurance coverage of therapies, you NEED THE LABEL !)