Wednesday, November 30, 2005

"I'm not naughty, I'm Autistic" (Journal #11)

While we will never make excuses for our parenting of Sam, it is true that a lot of his behavior looks naughty when he is having a hard day....when he is having what Brent and I call "An Autistic Day".

I am frequently reminded of what it looks like on many outings to the store, when I get those "glares":
- because he is tantruming because I won't let him walk, because he is a runner (runner awayer that is)
-because he is screaming and clawing my face because I won't stop the shopping cart so he can sit in the middle of an aisle and play with the carts wheels like he likes to do sometimes (forever, and I don't always have forever, although I could live at Target).
-because he is talking extremely loud saying the same sentence over and over again until he gets the response he wants from me.

Glares, yep, get them a lot. People are just rude. I get tired of them looking at me, like I can't control my child, or I have spoiled him and he always needs his own way.

We actually have a business card we have ready to give out at all times from the Autism Society of America. It reads simply this:

My child has a neurological disorder called Autism. He is not being naughty and we are not being bad parents for not reprimanding him. Children with Autism can often behave in an unpredictable manner because they find it hard to cope with many everyday situations. He is quite simply doing his best. Please be patient.
For more information about Autism please visit:

We are thankful we don't get those "glares" from family. They have been wonderful, supportive and so understanding. After coming off of family time at Thanksgiving, we really only had one big "melt down" as we call them. He appeared very "naughty" at the end. When Sam does things that appear to be intentional, like destroying his brother and cousins puzzles, it is that... intentional. However, what makes it different, is that it is intentional for reasons we don't know or always understand. For example, we do know that with Sam's SID (Sensory Integration Dysfunction, typical with Autism), that he likes to scream, he likes to be tackled by his brother, he likes the deep pressure. Therefore, many times he does mean things to his brother so he can his brother will tackle him out of anger. But, when it is interrupted by Brent or I picking up Sam (the only way to get him out of that behavior is to remove him from or redirect him from the situation), it takes his "plan, ritual, routine" that he wants to have happen and ruin it in his eyes. He will scream, hit, kick or whatever until he is tired. It does no good to talk to him when he is this angry, or to put him in time out. They don't understand time out.

What does work, is letting him have his melt down. Then, at a later date and time, creating a "social story" around what happened. Below is a web site that explains and gives good examples of what they are.
The only thing at this age is that social stories should be presented a little different. It is important to have the child be a part of you creating it and making pictures for the story, not just the words you read. (Thanks Lee Ann and Jenny for this advice and input).

Stacy, thank you so much for the compassion and love you showed when Sam had his "little outburst" at Thanksgiving. You asked exactly the right questions, which is what Brent and I are very open to, and want you all to do. Not only did you display true love and care, but you clearly asked what would be best in that situation if it happens again, and if everyone should leave the room. For that situation, it was just a matter of Brent removing him and restraining him until he was calm (sorry Kelly for Alexis getting knocked down by Brent coming through, but she would have gotten hurt worse by Sam throwing something again if he didn't take him right away), and a social story followed the next day at a time when he was very calm, and was also repeated. And Stacy, you were also very correct in that it is best if just one of us deal with him and give the directions, as the more people yelling, telling him what not to do or do, the more confusing it is for him. Also, if we yell or raise our voice, he does the same thing but it escalates even more.

Some things that we don't want family to always worry about or feel like you need to intervene (unless we are getting hurt), is that when he can't use his words correctly to make his request or point and he gets angry. For example, during Thanksgiving, there was a point that Sam was not getting understood and chose to hit me several times (just my legs). I was choosing to ignore him..... a) because it didn't hurt b) he is a little different than other kids in that if I were to have responded with "we don't hit", he will not care because he just has in his mind what he wants. If I respond to him hitting me, he is getting the attention from me that he wants so I will figure out what he is saying. He then uses me to communicate instead of himself. So, sometimes it is "wait time" and holding out that we are doing to see if he can figure it out. That is what we have always done, which we have been told, has probably helped in the great language he already has. So, when Brent and I are right there, witnessing the behavior, if we are not addressing it, there is a reason from experience that we aren't. The incident where he was hitting me, involved someone else telling him to stop, which in turn, solicited a response from Sam that was him screaming "no". He wanted me to talk to him (in his head). I wasn't responding, the other adult was, so he wasn't going to stop. He then started hitting more because he was mad. That same situation happens to me on a daily basis. When I tell him to stop, or to use friendly hands, 99% of the time it escalates. When I ignore it, it stops much more quickly and then he is calm and I can encourage him to use his words.

Below is an excerpt from another parent of an Autistic child who wrote a publication called "Living with Autism":

Over the years I have come to realize that most people do not know what autism is, yet they know what Down Syndrome is. Maybe this is because autistic children 'look' like everyone else. The thing is they aren't like everyone else. This is one of the things that makes bringing up an autistic child so hard: the lack of understanding, by others, of their condition.

'Research has found that parents and families of a child with Autism are under greater stress than those with Down Syndrome or who are physically or mentally handicapped.'
-Autism News, Sept 2002.

Quite often an autistic child, in the eyes of an uninformed person, would be seen as naughty and out of control. The fact is these children don't know how to be 'naughty.' They cannot use their brain to manipulate a plan to misbehave. What they are seeing is a child who has a complete fear of the world. They don't understand the world as we would. They don't understand that if they cross the road without looking they could be run over.

Autistic children have to be taught EVERYTHING. Nothing comes naturally to an autistic child. 'It is important that everyone - parents, extended family, teachers and friends - understand that children and adults with autism are not like average people. The do not think in the same way and they should not be 'treated' like everyone else.' -Dr. Richard Eisenmajer (psychologist)
So.........even though Sam will look naughty sometimes or many times, how we will handle it may be a little different than when Zach or others are naughty. If Sam does something mean to one of his cousins, please remember that if we don't consequence him in front of you or in a way that you felt was properly compensated, please don't think that we didn't care or didn't think it deserved a consequence. Just know that we feel just as bad about what he did, but what we do with Sam may reflect it a little differently.
While I would never put one of these pins on Sam, people actually make these for parents because of the way their child looks and behaves in public:
I think Brent and I will stick with the cards. We love you all and thank you so much for being understanding, for not being afraid to ask us questions, for not acting like he isn't Autistic, he is, and he will have to be treated differently, and you have exemplified that.....................and for not being judgmental. We love you all.


Anonymous said...

Anonymous said...

Beautiful. My son is is 3 and classed as naughty..seeing a developmental paed at the moment so we are on the path now. His situation is different to your son yet I loved reading what you wrote. You have such a lovely understanding of your son and you are the best possible person to be his mum. Enjoy!

Anonymous said...

Thank you for writing this, I have often joked to my husband that we should get flyers printed to hand out. The cards are a great idea :)
Your son is very lucky!