“The Signs Of Autism”

When my daughter was diagnosed I heard all the autism statistics.  I read a great deal and I learned a lot.  But what I learned was not so much about autism as it was about non-Autistic perceptions of autism and what that meant to those who are not Autistic.  Non Autistic people tend to view autism with tremendous fear.  There’s so much we don’t know.   Non Autistic parents are left trying to sift through the opposing opinions about a child they may have a difficult time understanding.  Most parents deeply love their children and want what they believe is best for their child.  So when they see literature describing the “signs of autism” it looks scary.  The various “signs of Autism” do not bring them any closer to understanding their child, rather they serve as a critique.  Right away parents are shown how to view their child as less than, as not good enough, as “wrong”.

From the Mayo Clinic the first sentence under the heading “Symptoms” reads, “Children with autism generally have problems in three crucial areas of development – social interaction, language and behavior.”

If I had read this sentence upon receiving my daughter’s diagnosis I would have thought, okay, so how do we fix these problems, because  problems are to be fixed, right?   And though I did not read this exact sentence in 2004 when my daughter was diagnosed, I read a great many just like it.  I never once thought about the sentence and who was writing it.  I never once questioned it’s validity or examined the words being used.  It never occurred to me to read this sentence with skepticism and doubt.  It didn’t occur to me to wonder how my two-year old daughter might feel growing up in a society that believes the ways in which she interacts, speaks and behaves are viewed as problematic.  But I think about all of this now.  Not because my daughter is reading a sentence like this or because we are discussing things of this nature, but because I see everything regarding autism and those who are Autistic differently.  I am hyper aware of the judgmental and critical tone in almost everything to do with autism because I now know a great many people who are Autistic and they explain it to me.  I now know how offensive this language is and I understand why.

So let me ask all of you who are not Autistic this – how would you feel if you were described from the moment you were born as problematic?  How would you feel if you were taken from one doctor to the next, examined and criticized?  How would it affect you if you were told, “Stop looking at me when I speak to you!”  And then when you found that impossible, the person physically reached down and turned your head away so that you could not make eye contact.   How would you feel if you were paying attention and suddenly two hands grabbed your wrists and shook them so that  your hands flapped rapidly on either side of your face.  When you tried to pull away, you were told, “Move your hands!”  How would you feel if you were happily playing with your dolls and your parent demanded, “What are doing? Why are you making them interact that way?  Why are you trying to feed it?   You understand this is a piece of plastic and not real, don’t you?”

The point I’m trying to make, (probably poorly) is that almost all the literature about Autism is written by NON Autistic people and negatively compares Autism to a different neurology.  Is it any wonder parents feel so confused?  How is this thinking helping our kids?  How is it helping parents?

Presents

47 responses to ““The Signs Of Autism”

  1. Labels…I was a teacher for 18 years. Two moments haunt me, and both involved autistic kids. And you are right, the way we went about handling these kids was as if there was a problem, instead of just trying to see it from their reality. Now, autism has touched the life of someone I love and I see it so differently. And your blog helps me see it differently, too. What if it’s not a problem? What if it’s just another way of processing the world? Keep writing. We’re listening. Jen

    • Aw… Jen, thanks so much. This is such a process. I live with someone who’s Autistic and it’s taken me years to get where I am now. I speak to my friends on a daily basis who are Autistic and I still have so much to learn. Thankfully they’re very patient with me..

  2. Thank you. I needed to read something like this right now. 🙂

  3. Beautiful. Sharing. I needed this too , as since i am Autistic, when I say this nobody pays any attention.

  4. I sometimes feel terrible thinking about the times when, before my daughter was diagnosed with high functioning autism, I tried to make her conform to the ‘norm’ not realizing that she thought the rest of us were odd!

  5. Awesome post! Yet again, you show how much you get it!

    And Emma’s string! eeeeeeee! I love that she has that!

  6. When I was young (high school age) I worked with children that were classically autistic. There was one little boy in particular that I will always remember and I still keep in contact with his parents to this day to check in on him occasionally.

    He was labeled as “problematic”. He had a plethora of sensory issues -including a severe aversion to being touched- and his communication was strained and difficult. He seemed to not listen to care what the teachers were saying and it caused them a great deal of frustration thus they never spent as much time with him as other children. When I started that year for the summer program I found that he was not problematic at all. He just communicated in a different way, even from his autistic peers. I was able to work with him and get him into the same room as a blender (gasp!) and he even grew to trust me to a point where he would sit on my lap and let me pet his hair or hold my hand. The teachers thought it was some type of miracle but the truth is that I treated him with understanding and respected his aversions instead of trying to force him to “acclimate”. When he realized I wasn’t going to try to “force” him to do anything he didn’t want (nap, eat foods he didn’t like, ect) he was significantly more open to things I suggested.

    It always baffled me the fact that people were confused or scared of autism. It is a different world than we live in but if one just takes the time to get to know the autistic as an individual you will find they are FAR from difficult. They are unique and life presents them special challenges but if you just let go and respect them you will find that they open up in a way that is wonderful and gratifying.

    Ps- I love the book!

    • Thanks so much for sharing this!

      • Also, just to let you know…his childhood “obsession” was cars, trains, trucks, ect. Anything that had wheels and a horn. As he became older it became a fascination with the inner mechanics of a vehicle.

        He is now 22 years old and works as a mechanic for a lovely shop that understands his aversions and doesn’t force him to speak with the public if he doesn’t want to (though he has grown leaps and bounds in that department). He actually makes a good living. And he still calls me “nice lady” every time I talk to him. 🙂

    • This is one of those things that is just so obvious to me, I’m almost constantly at a loss as to how most neurotypical adults don’t get it–that being given the opportunity to try things, or any measure of control over when and why you try something difficult, is so much more empowering and toleration-building than being forced or coerced. Do most people remember so little of what it was really like to be a child that they think forcing ever really works?

      I’ve had similar experiences with a couple of different kids who were thought of as difficult or spoiled by everyone else around them (who also turned out to be autistic, no surprise), but who I found to be really sweet, scarily intelligent kids the moment somebody treated them like actual people.

  7. Great post, and so true. When I was diagnosed with Asperger’s, the first thing my parents did was (understandably) to Google it. All that did was scare them needlessly.

  8. when zack was due for school, he was turned down by two small education centres who seemed to be under the impressio that since he didn’t speak much, he did n’t think much either…. Then we went to a larger school, met with the head master to discuss zack …. He said to us… All kids are different, all kids are special, now tell me how your son is special…..
    This was the beginning of an amazing start to school for zack. He has had fantastic teachers every year so far, and access to one on one teaching as required. They are very accomodating of his sensory issues and will do what they can, admittedly mostly my suggestions, buts its great that they listen to a parent.

  9. Thanks for this. Some days I need a little reminder to just breathe and be cool with it. I got called in to school this morning because I forgot to put her shoes in her backpack. She wore her snow boots to school and lost it when she didn’t see her shoes to change into. Crying and a trip to the nurse’s office ensued. When called, my first thought was “Why can’t she just wear her gym shoes?”. That thought used to stick and I couldn’t get past it. Now a secondary response always seems to enter my mind….”Oh, gym shoes are only for gym” because that is the program, the rule. And it is in that moment that I know I am getting closer to understanding. Our daughter Charlotte was diagnosed with Aspergers when she was 5. She’s 9 now and mainstreamed in school but with help from an aide now and then. I didn’t get her no matter how much I read…because what I read on “Google” wasn’t written by or discussed by autists themselves. I am not proud of how I dealt with her before her diagnosis and a little time after. I just didn’t get that her stims served a purpose and saying “don’t do that” was ridiculous and counterproductive. I didn’t get HER. The more I read from autists who publish, who blog, who just write a little on FB, the more I get her now, the more I really feel her.

  10. Ariane you are so inspirational! Look what magnificence you can accomplish having overcome your Echolalia-challenged language deficits and sensory hyposensitivities! In all seriousness, though, Love.

    • Ib, you are so kind to me and forgiving! Hehe. I am grateful that you are still my friend despite my various deficiencies!!
      And just so you know. I do love you and your sense of humor, which I totally *get*.

  11. I loved this post! I was just having a similar discussion with my doctor last week. Why is it “wrong” or “problematic” that my son does not pretend to feed himself from empty bowls and cups, or pretend to feed the dolls he was given to play with during his evaluation.

    Don’t they know that the dolls are not real? Don’t they know that the bowl is empty? Why would he feed himself air? Who decides that pretending to eat and drink air, and feeding inanimate objects is normal?

    To me, that is absurb, and I thought my two year old was extremely smart to know that there was nothing to eat in the bowl and that the doll could not eat the air either.

    I left that evaluation and explaination of the “warning signs” thinking that they were all nuts! But of course, I am autistic, so they said I needed to stop using what is normal to me, as a yardstick for measuring whether my children are normal.

  12. It’s interesting to have your child diagnosed in 2011 verses 2004. While I till believe there is an enormous amount of ignorance and wrong perceptions of autistic individuals, it seems there has been a great deal of progress and understanding being made. With that said, I agree with you that much of our information should be coming from those who HAVE autism, not the other way around. Our progress and understanding would be that much further ahead!!

  13. Purring. Just purring ❤❤❤

  14. I don’t know, on one hand it creates a negative perception on the other hand when it or any other definition says they have trouble socializing, and you read it have trouble socializing with NTs its perfectly true. I don’t know anybody with Aspergers/autism who doesn’t struggle socializing with the rest of the world. It results in a negative outcome which is that it makes it harder to find someone to have an intimate relationship with or make friends. Growing up I always wanted more friends and people to hangout with. One could say that the problem is with the outside world not accepting how I behaved as legitimate or you could say I had trouble conforming to what is necessary to facilitate having these things. While both are equally true Since the world will always be NT dominated not socializing in the same way would is problematic and it is easier to change yourself than change the world.

  15. I was just looking at the picture of Emma and thinking will I ever love my autistic self or will I constantly keep beating myself up for what I am not. how do other people accept themselves for what they are and stop beating themselves up for what they are not? Some times it feels like I am getting much better at it and other times I realize I am not.

    • You know, I’m the same and I’m 52! Change can be slow, but keep believing in yourself and when you forget or can’t, let those who do, remind you.
      I won’t send those little hearts again because last time you only saw a little box with a question mark in it, so I’ll tell you instead…. I’m sending you *hugs* and little hearts of love.

  16. Very nice Ariane, thank you. Last night on the local CBS channel they talked about “Mental Illness” and how it affects the families and how they overcome. And the kid they mentioned was a very nice young man who had Asperger’s. I was extremely mad. And the sad thing is they were trying to give people exposure so that more people are accepted. Their hearts are in the right place but they used the wrong language. I know someone there and I will be talking to them.

  17. You OF COURSE make the point beautifully – not poorly- and I imagine I would feel bewildered. It would probably shut me down.

  18. SOOOOO Beautifully written! I totally agree with you and am going to share this post everywhere. Everyone needs to read this! Thank you so much for putting your feelings out there and making a difference. Hugs!

  19. I do not have a diagnosis of autism and I don’t think that I need one or would even be able to get one if I wanted, but the more I learn about my kids, the more I recognize small parts of myself writ large in them. Things that I have learned to overcome, like my mental stutter of “and so and then” and things like that which used to delay my speech enough to make it a bit awkward and a number of other symptoms and aversions which I always credited to the child abuse I was subjected to, I now think of as my own little autisms. I wonder if any other parents feel this way? Awhile ago I had a discussion with my friend Laura Nagle (who has a great documentary called Vectors of Autism made about her) about refrigerator mothers and our own mothers, and me as the mother of my own girls. We came to the conclusion that the mothers who may have been labeled as refrigerator mothers in the past may have been mildly affected by autism themselves. It’s something I think about a lot. I don’t claim to be able to understand everything about my kids, but I sometimes wonder if we try to put too many blocks between parents and kids as the parents being fully neurotypical and the kids being a world away in autism.

    • Have you heard of the Broader Autism Phenotype? This is something I’d never heard of until a number of people encouraged me to take one of those online tests (they’re a little silly in that there are many flaws in it, but they give you an idea). I know many of us certainly fall into BAP territory.

  20. I was (and am frequently) described as problematic my own mother says to me “I’ve been suffering for 23 years(basically as long as i’ve been alive)” i forgive her she may think of me as a burden but God does not I know He has big plans for my future and I can’t wait to see it unfold.

  21. Another great one, Ariane. I love the picture of Emma reading I Love Being My Autistic Self. So cute! I got Kim that book and she really liked it. Now, we are reading Carly’s Voice together. Though I relate in so many ways to these parent’s feelings, I have skipped reading some of the words outloud to Kim which made them sound like their daughter was a burden. I appreciate as a parent Arthur Fleischman’s honesty about their struggles, but I can see how if someone with autism read his words that he/she might find some of his words offensive. I am sure his intent was to let people see how difficult dealing with Carly’s behaviors was and how autistic she was and yet show that she was “in there” all along as evidenced by her suddenly typing. Hopefully, his book will encourage other parents and “professionals” to stop misjudging autistic children/adults and to seek ways to help these individuals learn to communicate so they can let others know their needs, thoughts, knowledge, feelings, and dreams..

  22. Good Evening everyone !
    I find your article very interesting because it’s a good idea to have more descriptions from autistic people.
    Actualy, I was diagnosed with Asperger Syndrom on June 2012 and I was to dismiss from my former job (I was in the Navy and I was declared “disable” for each specialties owing to my diagnosis). Of course, when I engaged, I didn’t know…
    It’s just to say that you don’t have to be “labelled” autistic to be rejected by the others (called “neurotypicals”), being different is enough. At school, I have always been bullied by my classmates, so did in the Navy School and in my first assignment.
    I agree with you for saying that people are strongly prejudiced against autistic people (I speak in regard to what happens in France, my country) and the most important way by which I learnt that was when I had to dismiss from the army, because “they” had never seen such a case like mine – they pretended (That is, how can an autist pass psychotechnic and, above all, psychologic tests ?).
    They are so prejudiced against the difference that my mother was forced to make my see a psychologist – and in France, most of them are issued by psychanalystic tradition, and I will let you judge… – during ten years of my childhood. They couldn’t understand my “baby-like” social behavior associated with a “highly-above” intellectual potential.
    Even if I tell people that I am an asperger, they are prejudiced. They think about Rain Man and so on. So they are in my own university. So is my own father, who sees me as a “disable” (he lives in the USA) and fortunately, my parents are divorced…

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