Stimming? Seriously? Oh Please!
Autism awareness for me means doing what I can to dispel the myths and inaccuracies of what is and isn’t autism. This year I would like to talk about stimming – it’s a derogatory, inaccurate term and I would like to see it melt into the past, like institutionalizing autistic children.
It’s called “Stimming” – short for self-stimulatory behavior – and it’s an all-encompassing term for the seemingly odd behaviors seen in early childhood autism, like the flapping of hands. Who am I to want to demand a change in medical terminology? I’m one of the first autism moms - from before the surge in prevalence. My son, Matt, and I have been doing this for a long time and in my opinion the term is highly inaccurate. I see no “self-stimulating” behavior, and the words themselves feel derogatory, as if my child was unable to feel anything and had to flap to simply stay awake.
My son was diagnosed with regressive childhood autism in 1988. The severity of his disorder was brought home by the recommendation by an entire team of specialists to institutionalize him – he was only 2 years old. I went against that recommendation and brought my moderate –to-severely autistic, and mostly non-verbal, son home instead. We learned about autism the old fashion way – by observation, trial and error. We have navigated the choppy waters of autism, and pushed the boundaries of what experts thought autism was, for Matt’s entire life. Years ago when the term, “stimming” entered the conversation on autism I thought my head would explode. Seriously? People really think they need to self-stimulate?
Think about it a moment…. A child who is bombarded by huge amounts of environmental stimulation coming at them from lights, sounds, textures, tastes, etc., does not need to self-stimulate to “feel” anything. They already feel way more than the neurotypical child. It’s another one of those phrases that begs the question, “Who came up with this stuff?”
For Matt, the behavior made itself known through his hands - a twisting of his hands at the wrist – back and forth, back and forth, and flapping on occasion, just to mix things up a bit. So, while he didn’t actually flap his hands constantly, he did move them constantly. The term didn’t exist for this type of behavior – but the doctors and therapists at the hospital where he was diagnosed certainly had an opinion about it – I was to stop him from doing it. Grab his hands and hold them still. And like a good little drone, I did – for about 2 weeks.
Within those 2 weeks I was observing my son, watching and learning and wondering why he would “self-stimulate”. I came to the conclusion that it was emotional communication trying to be released from little boy who had trouble getting his emotions out. When he was excited, those hands were turning quickly – almost a blur. When he was content they moved in a slow, methodical rhythm that denoted calm. When he was anxious – they flapped.
Communicating emotion is much more difficult then say, wanting a drink of water. Wanting a drink he could point to the glass or to the faucet or to the refrigerator. Wanting to tell me he was joyful and excited? Hmmm….. Nothing to point at. His emotions were in his hands. Communication was in their movement. Do I really want to grab his hands and make him stop?
To be fair, I am only an expert on Matt – not autism. I couldn’t tell you about other autistic children. I was only able to read Matt’s behavior and observe the link to his emotions. Actually, there were no other autistic children around at the time – Matt had a rare 1:10,000 communication disorder called autism, and no one had ever heard of it. There was no Internet – no one to share notes with or compare behaviors with. So maybe, just maybe, his “stimming” was different than other autistic children – and only another parent can say whether or not they noticed the connection to emotions too. Feel free to let me know.
I do know that as he got older, and could communicate better with facial expressions, his hands didn’t twist or flap as often, and when a few words made it into his vocabulary that could describe how he felt, the flapping went extinct.
Stimming – it’s an awful word that suggests a child is not communicating with his environment – and feels nothing….. I hate the term. It has nothing to do with autism. Emotional communicating behavior would have been more accurate. And as for holding his hands still? As I said, after a few weeks of doing what the “experts” suggested I just gave up. I watched him twist and flap and I knew his brain was working on how to repair communication roads. I felt – I knew – that he was doing it for a reason, and I would not interfere with the process. It came to me one bright, sunny morning. We were sitting in the kitchen, my husband and I, and Matt was on the back deck just twisting and twirling around. How old was he? Three? Four? He had his Hot Wheel cars and a ramp to run them off of, and oh my, was he just the happiest little fellow. My husband looked at me and said, “Shouldn’t we stop his hands from doing that?”
“No” I replied – a smile on my face. “Look at his joy . . .” We watched the happiest person on earth roll one car after another along the ramp and into a flight pattern across the deck. Each car then crashed several feet away and the response to the flight / crash sequence was pure joy. Matt twirled in a circle and twisted both hands over and over, until he went to pick the next car for next aerial mission.
“He’s so happy . . . let him flap”. And I never again quieted his hands. Turns out I didn’t have to. Matt did it himself, in his own time.
The years flew by and those “stimming behaviors” (ugh! Just using it here hurts . . .), disappeared for the most part. Matt grew and learned and moved forward every year. He graduated number 4 in his class, with honors, in 2005 (the same year Autism Speaks was founded). In 2013 he moved into his own apartment. Matt is again doing the impossible – (still a trail blazer, that one), and I am so very proud of him.
My advice to those new to autism and the flapping – let’em flap. And during the month of April – Autism Awareness Month - can we please push to change that terminology from the inaccurate “stimming” to something more accurate, like “emotional communication behavior”? Who’s with me?
I got to meet the wonderful Temple Grandin in Roanoke at one of the seminars. I gave her signed copies of my book, "Autism and the World According to Matt" and she signed a copy of "Different, Not Less" for me. Felt like I had met a rock-star. Her talk on autism was wonderful - she's a great orator. And funny too!
I was asked once, "How does one person change the world?" My reply was, "One story at a time".
The diagnosis of autism was a rare one back in 1988 when Matt was diagnosed - only 1:10,000 affected. Then the numbers grew.....and people began to notice. I went from trying to explain autism to those Matt met each year, to really promoting autism awareness through my stories and speaking engagements using this little website. Although most people know the word autism now, we still have a long way to go to make this world a better place for those on the spectrum. Thank you for helping me promote autism awareness.
Thank you world, for your willingness to listen and to open your heart and mind to the mysterious puzzle that is autism.
Available in bookstores December 16, 2014
Reviews: 5.0 out of 5 stars
The World According to Matt Shines Light on Autism
“They say you must walk a mile in another person’s shoes to really know them. Liz Becker is an Autism Mom who walks a marathon in her autistic son’s shoes and details it beautifully in her book Autism and The World According to Matt: A collection of 50 inspirational short stories on raising a moderate/severe mostly non-verbal autistic child from diagnosis to independence.
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Autism Light, created by Alan Stokes, recognizes heroes in and for the autism community.
Honored as an Autism Light #13, on August 11, 2011". There are over 250 Autism Lights now and the number continues to grow. It's an honor to be a part of this autism awareness campaign. Thank you, Alan!
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Matt and I took the challenge. I went first so he knew what to do. He didn't like the idea of eyes-closed to draw, so I leaned in as he was drawing and told him it was okay to open his eyes if he wanted to.... but he didn't. Watch and see what happens when pen hits paper!!