When Em was not yet three years old we received her diagnosis and began the long trek through, what appeared to us at the time to be, the treacherous terrain of autism. All the things we admired, her various abilities, all those things I had identified as wonderfully “Emma” were now reduced to a single word “autism.” I remember bragging about the fact that Emma, at the age of 18 months had taught herself how to pump her legs on a big kid’s swing, only to be told after her diagnosis that “kids with autism will often display splinter skills.” When I then commented that my daughter was extremely independent it was said that her autism caused her to shun other children and people, thus reducing her independence to nothing more than, yet another example of, her autism.
After awhile I felt I didn’t know who my daughter was, other than “autistic”. That word seemed to so thoroughly obscure her in the minds of so many experts and people in the know. Autism, it seemed, meant lacking and less than and not capable. Whenever my daughter displayed things that could not be neatly placed in the deficit box, it was tossed into the “splinter skills” box. It seemed no matter what she did it was viewed as “deficient” even when it wasn’t. I remember feeling I finally understood what people meant when they talked about their child being imprisoned or all those awful images that abound of children silently, sadly, standing behind impenetrable walls of glass or behind bars of steel, their small hands gripping the cold metal as they silently watch the world go by. All of this, the words and images, showing us, telling us what we could and should expect were like seeing train tracks descending into hell. Who knew it would take me eight years to understand that so many of those impenetrable walls of glass were constructs made by us.
If we did the same thing to those who are born without Autism, if we talked about our non-Autistic neurology as a deficit and identified all the ways in which it would cause us problems and difficulty, would we not despair when our non-autistic child was born as well? Take your own life as an example and imagine that when you were born you were seen as a great disappointment. Think about how each time you did something well it was dismissed as a “splinter skill” and was seen as yet another example of all that was “wrong” with you. Think about what it would do to your self-esteem if your interests and passions were spoken of as “obsessions” or actively undermined and limited because they were seen as “unhealthy”. It’s a double standard we have. We non Autistics are praised, admired, given awards and accolades for our passions and obsessive interests. People describe us as “driven”, “ambitious” or any number of other words used to describe the things that interest us. But think if instead we were denigrated, ridiculed and scolded. What does that do to a person?
The way we speak of and about our children, the way we think about their neurology, the way we attempt to “help” them “fit in”, these are the things I hope will change because it is not helping us parent our children, who need our help, it is not helping educators teach our children, who need to be taught, but mostly it is not helping our children be all that they can be. My husband once said, “People spend all their time and energy trying to teach their Autistic kids to be something they’re not, when they should be spending all their time teaching their kids to be all they can be.”
Emma’s favorite work of art “Railroad Nostalgia” at the Scope Show in NYC.
Fantastic post, as ever. 🙂
Aw… thank you. Love your avatar, by the way.
Haha, thanks! 🙂
Ariane: Another great post; I’ve been thinking about this a lot lately. We tell our kids that they are awesome and perfect “just the way you are” and then we take them to the ends of the earth to people who illuminate their struggles. It seems each time that we allow a professional who doesn’t share our values and beliefs into our family bubble, our parenting and relationship with our son gets muddied. Of course we all have things that can supported through various means, but it must make people with autism feel less than when it’s non-stop “You’re perfect…we can fix you”.
I have never thought about the “you’re perfect, we can fix you” mixed message and how confusing that must be. To a literal mind this can only be seen as dishonest, also really hard to process.
Yep, another great one! I have been thinking about this “splinter skill” thing and it really annoys me. I have an engineering degree and a lot of my engineering friends fit the “spectrum” label. And they are VERY good at some things that most other people can’t do. So who really cares if they can’t do some other things that most can do. Doesn’t everyone have splinter skills anyway?
It’s every where in the non Autistic population as well. I am pretty sure these so called “splinter skills” are part of being human!
Please to watch The Power of Words DVD. It is exactly what you are talking about !http://www.aapcpublishing.net/multimedia/view/135/the-power-of-words-how-we-talk-about-people-with-autism-spectrum-disorders-mattersautism-society-award-winner-media-excellence-award-2010
I’m purchasing this DVD and looking forward to watching it. If I may, one of the first “words” I’d eliminate is “neurotypical / NT”. I view it as contributing further to “us versus them” mindset. As an example, I am not autistic but do not consider myself neurotypical by a wide margin; I am a social pretender as much as the “others.”
HA! Judy, I know this probably won’t surprise you when I tell you I already have this DVD! I bought it at the Autcom conference and plan to watch it this weekend!!
This is very timely thank you. I’m approaching the time of year at school when we have our parent conferences and IEP meeting. I have a different outlook than I did last year. One thing I want to change is having “make eye contact” a goal. I know that my son listens better and absorbs more when he is not making eye contact. When he is forced to make eye conact it he gets bogged down by trying to interpret facial expressions and loses concentration. My son and I were reviewing his IEP goals and he actually said to me that he doesn’t want to be made to ‘act like a typical child’ because he isn’t. He said its too stressful and I agree and support him..
I want the school’s focus to be more on how to accomodate my son’s unique learning style rather than to have him parrot acting like a NT child. This doesn’t enhance his learning at all.
Thank you for your blog. It has helped open my eyes more than you know.
Good for you Chrissy! I’m guessing this will be a huge relief to your son not to have to make eye contact AND listen AND understand AND respond in a timely manner.
Let’s start a list of terms we want removed from the discussion. “Splinter skills,” “Look at me!,” “functioning level,” for starters!
Keep still! Quiet hands! Use your words! Oh the list continues…
Unfortunately, I know what it’s like to be regarded as a disappointment by my parents and was constantly told that something was wrong with me. That’s one attitude that’s not restricted to autism. I know we have done Emma a disservice many times, due to our lack of comprehension regarding her abilities. However, I do believe that she has always known that she is loved and that we will go to any lengths to better understand her and her world. Best of all, now she is telling us how she feels!
((((Richard)))) How did I get so lucky?
My splinter skills would be labeled “giftedness” and celebrated and cultivated. Why should my kid’s splinter skills be labeled anything otherwise?
Right. We are cheered and supported and so should ALL of our children be for their various interests.
I have followed your posts with great interest. Almost everything that you have been thru so have I. My daughter is 31. I believe that I went to the FC conference about 20 years ago. Once we started typing my daughter started talking so we gave up on the typing. At two when she could sing songs we were told it was a splinter skill. When she taught herself to read at 4 again it was a splinter skill. My daughter is wonderful but the story does not have the great outcome we hoped for. Too much time was wasted in educational settings that only knew one way to teach and it wasn’t the way she needed to learn. The result is a wonderful person who spends much of her time watching tv. Playing iPad. She has no friends little social skills and is not able to live independently. Fight now for what you know they need because there is little available as adults
Amy – thank you so much for reaching out with this comment.
Not that I am a fan of the while splinter skill term in the first place but the person who applied it to her pumping her legs on the swing may just have a huge splinter if not a tree branch right in their brain.
I have savant skills, including the dreaded being able to pick a deviation for the expected out of a very large array. (May have faded now as they tend to with age although I still handle large data sets very well) At the time the most astonishing manifestation of that appeared I was in university and was dragged from professor to professor introduced as that student my boss had told one annonymous person after another. I was still struggling with acceptance and only wanted to be normal and actually turned down what would have been a chance to get quite wealthy by my standards because I was so mortified. My boss did to be fair pay me extremely well for what was a seconds work but even though she was also very careful to also make a point of not describing it specifically in the demeaning ways typical (well at the very least stripping idiot off savant) and pointed out how useful it was and that in her particular case I had pretty much saved a lifes work (I doubt this assertion, it was a very large data set and 5 errors in fairly insignicant columns wouldn’t have gotten things too out of whack. The truth was the whole thing scared me. I didn’t know what each column even stood for so the implication of the processing involved to realize what numbers had to be wrong, and then the steps it took (was also a secure study) to get the right numbers was awful. I shook from the time it happened and could barely log off, until all that was done while everyone was more focussed on this new even further from the norm thing I had done.
Why they can’t call it what it is which is simply extremely good and completely subconscious processing to recognize a potential deviant in a set. Humans are by nature pattern recognizers. That and our ability to adapt our environment are among our few survival skills. I am pretty sure the notion of wow we really value this skill could be conveyed without the circus side show.
Richard compared to many parents you and Ariane would be in the gifted class (for parents of any variety) as far as recognizing where mistakes were made and the managing to convey Emma is loved, not only loved but celebrated for who she is heck that’s an area many parents completely wash out on and it is so foundational to good emotional health so whatever you beleived because the “experts” said it must be so by having conveyed that to your children that’s an enourmous gift.
This was one of the things Soma spoke of during her training. This desire by people to make it “magical” or a “miracle” when someone does something people assume they can’t or are astonished by.
And thank you Gareeth for the kind words of encouragement. I don’t think I’ll ever tire of reading them. It means a great deal to us. (I’m pretty sure I can speak for Richard too on this one!)
I don’t have to imagine I’m living it sometimes I feel like I could find the cure for AIDS and people would still see me as “the girl with Cerebral Palsy.”
So well written! Why can’t these people celebrate the achievements of our autistic children, no matter how great or how small? How can they expect real progress when their dismissive attitude hampers the learning curve of parents just starting to cope with a new diagnosis? Let our children be who they are!
Lillian – I totally agree with you. Thanks so much for commenting!
Lovely. What you have expressed Ariane. All the comments and replies. All showing how “presuming competence” is an actively growing, relation-sustained, community-networking, person-integrating, Emma-nurturing, life-force thing.
“… all those things I had identified as wonderfully “Emma” were now reduced to a single word “autism.””
Thanks so much, Colin!
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Excellent post again. As I think back I too can recall words that however intended, diminish the Autistic person as less.
But that’s the thing about knowing and learning and then looking back… there were so many things I just didn’t know yet and now ten years from now I’m sure I’ll look back to some of these posts and think the same!
Thank you so much for this post! My son taught himself to read at 2 years old and you would not believe how many people dismissed this as a “splinter skill.” His speech is very limited (still, at six years old) and he doesn’t always understand what he reads, but I feel blessed to have one more avenue of communication for him and I know that the written word is more likely to be understood by him than spoken words.
Lori, you reminded me of when my daughter was in an ABA based preschool and there was a little boy of about 3 maybe 4 who was reading everything and all the therapists and teachers told the parents not to allow him access to reading materials because it wasn’t “age appropriate”! I remember thinking – but this is crazy!
Oh. My. God. This was amazing! You nailed it! That is exactly how I felt about my son’s diagnosis! Before he was diagnosed, he did things that were “uniquely Finn.” After he was diagnosed, those things were “autistic.” I thought I would some day be telling his future wife the story about how he had to hear “the Little Red Caboose” over and over and over again. Then autism explained it all and I was crushed. I’ve come to realize that autism doesn’t explain everything. He is still uniquely Finn. We’re just trying to help him feel happy and confident in his own skin.
Such a powerful post. I’m going to be rereading this one for a while!
It makes me sad when I think about those years when I felt really confused by the information I was getting about Autism and how it affected the way I then viewed my daughter. 😦
As a special ed teacher, I cannot tell you how many times I have told people that kids are not defined by the labels we place on them. We place the labels to give OURSELVES a clue as to how to teach them, but every child is unique, and every child has strengths and needs. One of my students (with autism) was an animal expert. He had an incredible body of knowledge in this area in 6th grade. This is not a “splinter skill.” This is where is genius lies. As Albert Einstein said, “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” And if we keep trying to define our children by making everything pathological, we are missing the most important information about who they are. A child is not a disorder. Some of my students have autism, but autism DEFINITELY does not have them!
Thanks so much Dawn for leaving this comment. I didn’t see it until just now (three months later!) Not sure how that happened!! Love that quote by Einstein.
Oops, this is where HIS genius lies!
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Wonderfully informative, insightful (hard-earned, yes), but so helpful to those of us on the outside who are trying to understand. Thank you!
great post, Ariane 🙂
It’s too bad that the professionals in your life have put a bad taste in your mouth regarding “splinter skills”. The truth is that this term describes the extreme discrepancies in the skills of a person with autism. It’s normal for some people to be better at certain things than other people. It is a “splinter skill” when the person has some abilities that are so dramatically better than would be expected at their level of development, and other skills that are so dramatically below what would be expected. I have never approached one of my autistic students as though their higher skills were a bad thing! My goal is always to bring those lower skills up to the level of the higher skills, by using the higher skills as a measure of their overall potential!
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