When Tate was diagnosed with autism, I did not know
anyone else with autism. I had no idea what the right thing to do was, nor if
there were any treatments. I quickly began educating myself about autism. I
read many books and surrounded myself with people who could help us. We began
ABA and tried our best to use “best practice” methods. Forty hours a week of
discrete trial and incidental teaching, redirecting stereotypic behaviors, and
teaching social skills.
I did have the Internet, but social media was not yet a
“thing” when Tate was three years old. For that I am grateful. Shocking, coming
from a mommy blogger who loves nothing more than interacting with others from the autism community isn’t it? Let me explain.
If I had turned to Facebook and mommy bloggers for my information, I'm afraid I would have done many things differently. And if I had done many things differently, Tate might still be stimming his day away and unable to do so many of the things he can now, twelve years after his diagnosis.
So many autism parents today, in the name of autism
acceptance, are telling us not to try to change our children with autism. The
politically correct thing has become “Don’t ask a child with autism to step
into your world. You should step into his.” The thing is… mom and dad will not
always be there. The child with autism is going to grow into an adult with
autism. And all those things that you did not ask him to learn, and all those things he did not have to give up (because he
has autism) have the potential to make his adult life so much harder. The stereotypic behaviors could make him a target for bullies. Those things you did not ask him to give up are likely going to be ingrained and a huge part of his day.
According to so many autism moms who are blogging, their
children with autism NEED the stereotypic behaviors. They say the behaviors
serve a purpose. Some even suggest that we should stim right along with the child.
The sensory issues are real. I get that. I get all that. Tate NEEDED to do those things too, when he was small. But those things were getting in the way of his learning. And he NEEDED to learn. I chose the hard road. The majority of the stimming NEEDED to go. One of the hardest parts was that when one stim was eliminated, another often took its place. But we kept at it, gently trying to mold and change the way our son dealt with stress, boredom, and excitement.
The sensory issues are real. I get that. I get all that. Tate NEEDED to do those things too, when he was small. But those things were getting in the way of his learning. And he NEEDED to learn. I chose the hard road. The majority of the stimming NEEDED to go. One of the hardest parts was that when one stim was eliminated, another often took its place. But we kept at it, gently trying to mold and change the way our son dealt with stress, boredom, and excitement.
Tate wanted to run back and forth on his toes, from
one end of the room to the other. I put things in his path and redirected his
attention. All. Day. Long.
Tate wanted to look at his reflection in the oven
door, the television, and mirrors for long periods of time. I covered the oven with a towel, the
television with a fitted sheet, and took down the mirrors.
Tate wanted to use books to fan the pages for thirty minutes at a time. I made sure he stopped and looked at each page or we put the
book away.
Tate wanted to wave his hands and wiggle his fingers. We
gently took his hands and put things in his hands to hold and tried to keep him
busy playing.
Had Tate’s favorite stim been head banging until his forehead bled, no one would think I was a tyrant for redirecting it. Had his stim been to bite himself or others, my efforts would have been approved of as well. Would he have NEEDED those things? I drew my line way before those things though, so I have been told I am not accepting of Tate or his autism. HA! I’d step in front of a truck for my boy and I’ve worked so hard to help him. It would have been much easier to just let him stim.
I heard from a mom recently with a son about ten years
old. She had been trying to convince a therapist that her son NEEDED to stim
and it was cruel to ask him to stop or to reduce the amount of stimming he engaged in. Because the therapist would not agree, the
mother thought the therapist did not understand autism. It could be that the
therapist understands autism better than the mother.
What if I had not redirected all the stimming when
Tate was small? What if I had given up because it was so hard to do? Our lives
would have been so much easier for those preschool and early elementary school
years, for sure. But what about now? Tate is six foot, three inches tall. Any
stimming he wants to do now, would be impossible for me to deter. He still occasionally stims, but it does not take up large parts of his day, nor does he rely heavily on it to entertain himself. His go-to stim now is pacing, which he does when he is nervous. He sometimes stiffens his
body and uses his hands to push on his legs when he is bored or anxious. But those things do not consume him like his stims did when he was small. Would he have eventually outgrown it all on his own?
I suppose he might have stopped or reduced all those stereotypic
behaviors on his own. I could never prove he would not have. I was unwilling to
take that chance. All those hours I redirected the stimming were not wasted
either way, because every minute Tate was not stimming, he was learning. I was
teaching him: how to pretend, how to read, how to interact with others, how to
use verbs, pronouns and prepositions, social skills, turn taking, how to tell a joke,
and so much more.
I know how hard it is to redirect stimming. The
enormity of the task is intimidating. If you choose to try to eliminate the stimming, you may become discouraged at times. But, do not let the moms who are engaging in stimming with their child, in the name of autism acceptance, deter you. It may be that many of those kids will someday be six feet tall and their moms will be wishing they had eliminated or reduced some of the stimming when they were very young too.
I didn’t “cure” Tate. I'm not making that claim. But I did help him to “fit in”.
I do not understand the mind-set of so many parents in the autism community lately.
Asking a kid with autism to conform is not abusive. One of my favorite quotes is the one that tells us not to judge a fish on its ability to climb a tree. But, I did not ask my fish to
climb a tree. I asked my fish to swim faster, harder, and be a stronger fish, something that would be politically correct for a typically developing child, but not for a child with autism these days. And yet, we autism parents are often asking the world to treat our kids as they would treat any others.
Perhaps there is no true right or wrong answer about the stimming. Or perhaps we will not know until this group of children who are encouraged to stim have grown into adults. Perhaps these children will be far better off and healthier than my son who was constantly asked not to stim, or to choose a more subtle stim at times verses an obvious one. Perhaps there will be no difference at all.
Hi Lisa, I have to comment on how great and necessary this post is. I haven't had much first hand experience with autism, but I from what I do know about it and from what I've seen, you did the right thing. Allowances can be and should be made, but at the end of the day, we have to remember that the child will become an adult that has to be able to take care of themselves on a basic level at the very least. We must not hold them back, but indeed, we must encourage them to improve, in their way.
ReplyDeleteWhen I was younger, I did okay, but not great in school and I actually struggled a lot in some parts. My mom though, did what she had to do to help me. I took a lot of after-school lessons, I had speech therapy (because I had pronunciation problems), among other things. When I wanted to drop out of University my first year there, my mom encouraged me to stay. Today I have a degree with Upper Second Class Honours. I have my mother to thank, for pushing me to not give up, but to fight. I have issues that have made University extremely difficult for me and I wanted to drop out many times. Even now, there are job opportunities I would walk away from, but for my mother telling me, give it a chance.
Overall, Lisa, what you do for your children is amazing and I love how you are spreading autism awareness. Tate's ability to function in a normal school setting, albeit with allowances, is inspiring. Where would he be, had you not led him to where he is now.... Congrats on everything you've accomplished and keep being an amazing mom.
Thanks so much for the encouragement. I'm so glad you had a mother who knew just how much to push too. -Lisa
DeleteMiss Lisa, do you know anything about fragile X syndrome? I've been researching it for a school project and read that it is linked with ASD. I was wondering if you knew anything about it?
ReplyDeleteI know almost nothing about it. Thanks for reading the blog!
DeleteYeah, I get what you're saying, and I'm happy to learn of your success with your son. My son does stim a lot. I'm surprised to hear people encourage stiming, sounds like an odd theory. I sort of fall in between. I tried, as you did, to remove and discourage all stiming activities with my son. Some I stopped, some I lessened, and others I failed to correct. Now we use his favorite stim's as rewards and motivators in therapy. My wife and I figure, if he's going to stim then he will have to accomplish or learn something first. Enjoy your blog. Keep it up.
ReplyDeleteI have heard several of the young mothers say that they stim right along with their children. It is not something I would ever do myself.
DeleteIt sounds like your son is very fortunate to have you as his mother!
ReplyDeleteBettye Rainwater
http://www.nssa.net/fitting-the-pieces-together/
I'm really glad I found your post. I often struggle with this. I have an almost zero support system from family and no friends. I often get looked down upon and talked about when I try to redirect or just plain won't tolerate certain stimming. We really need more therapy but can't get it. It is so lonely on this road.
ReplyDelete