I Think I Finally Understand – But I May Still Need Your Help

I am reading I am intelligent by Peyton Goddard and Dianne Goddard with Carol Cujec.  I am not finished yet.  It is a powerful, beautifully written tale of triumph about Peyton who was denigrated, undermined, diagnosed as “mentally retarded” believed to be incompetent then learned to communicate through a facilitator as a young adult and proved everyone wrong.  Peyton’s story is shocking, heartbreaking and revelatory.  Her mother writes with a poetic beauty about her own evolution as she worked to help her daughter, refusing the labels being applied and yet allowing that they seep into our thinking unbidden despite our rejections of them.  I have been  unable to think of little else.

As I read Peyton’s and her mother’s words I finally understood why so many object to the labels of “high,” “low,” “moderate” when describing an Autistic person.  This is a concept I thought I understood, I certainly understood it intellectually, but I didn’t feel I completely understood until I was about half way through this terrific book.  I have felt uneasy when people have rejected the delineations for autism.  A  little voice in my head whispered those clichéd words, yes but if their child weren’t so high functioning they wouldn’t be so quick to dismiss these terms.  I admit to having felt uncomfortable and even upset when I read accounts of other parent’s struggles with their brilliant, verbose, hyperlexic children.  What I would give to have a child who could speak and think circles around me, I thought with envy.

Mostly I’ve remained silent, understanding that my thinking was limiting but unable to work out exactly why.  I felt the pull of other parents whose children are non-verbal, some violent in their frustration to be understood and unable to communicate. When those parents used the word “severe” it was a short-hand I thought I understood.  Yet, I read a blog of a parent who described her two children as being “severe” and then felt confusion when I read her posts because the children described were academically and verbally much more advanced than my own “moderately” Autistic child.  But I said nothing and tried to move on, understanding that I didn’t understand.

Finally I sent such a post to a close autistic friend whom I trust and knew would not judge me harshly.  I ranted and admitted how I felt.  She was patient with me.  She gave me the space to be confused, though it must have been difficult to stay calm in the face of my non-understanding.  Particularly as she is one who could be labeled “high” functioning and yet her teeth cause her pain when she is lied to, she suffers migraines and becomes overwhelmed, yet feels she has to pretend that she’s fine.  She carries the weight of not wanting to burden those who love her, because she “should” be able to deal with the things that she cannot.

As I read about how Peyton started to communicate by typing and how people began to see how intelligent she was, a little light went off in my brain and I got it.  Because (and this is probably obvious to many of you already, but I’m a slow learner you see) Peyton was labeled all sorts of things by people throughout her childhood, but those rating systems did nothing but hurt her.  Not one of them actually helped her, they didn’t support her, they were used to further segregate her and they were used by some to abuse her horribly.  As I was reading, I thought, right because Emma is considered “moderately” autistic, but she’s not moderately intelligent.  Her intelligence is extremely high, so what does moderate really mean.  Is that how she “seems” to neurotypicals?  But how is that helping her?  It doesn’t help her.  In fact, by thinking of Emma as moderate or severe or mild she is being limited.  If someone who is thought of as “high” functioning then can’t cope in a crowded place with fluorescent lighting and begins shouting and flailing about, the common thought is, well he could control himself, but is choosing not to.  Just as a “severely” Autistic person is an inspiration and miracle when they are able to express themselves and communicate their thoughts to those who had slapped a low IQ on their charts.  These ratings become the method by which a human being is seen as non-human or less human.

In my enthusiasm I wrote to my friend, Ib last night.

Me:  I think I finally understand what you and others have meant about characterizing autism in terms of mild, severe etc I suddenly had a brain flash and I think I understand why.

Ib:  Oh thank heavens 😀

Ib reminded me that the scaling system is ineffective as a descriptive device as children grow, progress and become adults where they continue to grow, evolve and progress.  I thought of Peyton finally finding a way to communicate in her early twenties.

Ib said, “You wouldn’t grade me now as you would grade teenager me the level doesn’t stay we grow, like anyone else.  I remember things that is why I can suggest to you what Emma may mean with levels-thinking, you may never have seen me as a resource because “Ib is not like my Em” but you see that I am.”

Ib is right.  She is my friend, first and foremost, but she is also someone I rely on to help me understand.  Because there is so much that I don’t.  But with help I can.

I would love to hear from anyone who cares to chime in here.   If I’ve been disrespectful, please let me know.  I think I’m getting it, finally, but I want to hear from all of you.  I need to understand this.  For my daughter’s sake, I have to understand and she can’t explain it to me…  yet.

44 responses to “I Think I Finally Understand – But I May Still Need Your Help

  1. As a parent of a young child that has moved from little speech to more speech in a short span of time, I have gone through a range of emotions. First is one of resentment, where I resented parents whose children are highly verbal and yet seemed fixated on the deficits they still perceived their children to manifest. Good grief, I thought, your kid talks and are high functioning, shut up already.

    Now, as my child is learning how to use the words he has learned, I feel both grateful and apprehensive. Gratitude is obvious. Apprehension comes from my realization that more than ever for my child, autism will be an invisible curse, a source of judgment more than inspiration, the reason why society may feel justified in blaming him as weak or unwilling to apply himself when he should have done better given that he appears so….. High functioning.

    Then I understood why autistics hate the functioning label. What the hell does high functioning mean, anyway? When I watched Loving Lampposts, I was immediately struck by the nonsense in functioning labels. I saw the restrictions these placed on adult autistics, and I began to realize how this high functioning label is a crack-cocaine variation of a so called model minority (I’m Asian and I was steeped in that myth) and how this appears at face value to help autistics, because high functioning sounds more hopeful than low functioning (or mentally retarded, as autistics used to be labeled), but this is one of those good intentions that paved the road to you-know-where.

    Because now a child can assume even better disguise for normal, thus society may take upon itself to judge high functioning children harshly and blame them for fabricating excuses…they appear higher functioning based on verbal communication, therefore society congratulates and rewards them with a whole new burden of should’s and punishment. So no, I don’t feel wildly happy when I hear high functioning, I feel fear for the myth this perpetuates that chikdren are growing into.

  2. Ibby is right. We are always changing, evolving. We also move from seemingly “severe” to not at all. Or we can cope well in almost everything until we can’t anymore.
    As someone with a similar path, I know how Peyton felt. Being the “low” only hurts us because the message, when referring to us, is of hopelessness, sadness, failure. We are never thought of as participants, but like a drag on society

    • Hi Amy, thanks so much for your comment. Peyton and you are great examples of how the process is fluid and not stagnate. Two people who not only throw the whole “drag on society” idea out the window, but are doing so much good.

  3. I love this, Ariane! Thank you for your willingness and courage in sharing your process, even if it was uncomfortable. And thanks for sharing this book. Can’t wait to read it.

  4. I love this. Love love love. Thank you to sharing. I’m one of those parents with the verbose, intellectual boys who fit every aspie stereotype. I’m also an adult autistic effected in ways my son never was and crippled by the “high functioning” label because outsiders don’t see the aspects with which I struggle. I lose speech often, and my proprioception, balance, and fine motor are such that tasks like brushing my teeth or walking down stairs require a great deal of work on my part. (still my husband ends up wiping toothpaste of my face while we’re out more often than I care to admit) Still, I’m told at least once a week that I don’t understand what it is to be “really autistic” because I have children, grandchildren, and a spouse. I’m still waiting for a non-offensive explanation of what one has to do with the other.

    • oh thank you for this Bridge Allen. (By the way, love your name!) I think of myself as intelligent and yet I read comments like this and I don’t feel very smart. I still have trouble understanding how Emma’s sensory issues impact her ability to process language. I have drafts for posts about this, I’ve done sitting “meditations” in which I’ve tried to imagine talking to someone while not being able to focus on their voice but could hear the air conditioner and the siren outside all at the same volume, while also hyper aware of the cool air blowing on my skin and the waistband of my pants cutting into my flesh while trying to ignore the change in air pressure that causes pain in my ears and head. Even after all of that I STILL forget that Emma is experiencing things far differently than I am. I STILL forget. No one condemns me for that. I am even congratulated for trying to understand. I have a responsibility to understand. I often wonder how long would it take for those of us who are non-autistic to understand if we were given the opportunity to be autistic for an hour or two or three or four?

  5. I’m sure this was tough to write, Ariane. I have so much to say, I don’t even know where to begin, maybe one day we can get a cup of coffee together and share our experiences more fully 🙂 I know I’m that mom with the highly verbal “high functioning” child you referred to who annoys people sometimes. I totally get and respect where they are coming from, and try to be respectful. ugh….I have written and rewritten the rest of this too many times. i obviously don’t have a handle on this yet so I’ll quit while I’m ahead and try to post something myself at some point. thanks for this and the book, Arianne!

    • You were NOT the person I was thinking of when I wrote this! 😀 But I love hearing about and from you and other parents like you because the more I read and examine my responses to what I’m reading, the better I’m able to not only help my own child, but write things that encourage others to enter into the discussion. Without the discussion we’re all lost. Come to NYC and let’s grab a coffee! I’d love that!! (Seriously!)

      • o goodness, I didn’t mean to imply i thought I was ACTUALLY the one you were referring too. I was more thinking of in real life, in my community, I am that person…..You know it’s funny, I don’t live that far from NYC so it’s a goal to get there, but the likelihood of getting my guy whose every nerve would be on fire with the hustle bustle and noise of NYC makes it a long term goal for us. 🙂 I loved the other day when you posted that Emma loves a room full of people to talk to…. It made me happy to think NYC.must be a perfect place for her curiosity in so many ways 🙂

        • So that was MY literalness coming out! LOL. I kind of love that, I have to say. The apple doesn’t fall far.. etc.
          Yes, Em loves being out on our ranch in Colorado AND she loves the bustle of the city. I took her to visit a school we are thinking of putting her in and she immediately ran up onto their stage in their auditorium! It was hilarious. Someone give that girl a microphone!

  6. I will be looking for this book! Thanks for posting such a great blog I always enjoy reading.

  7. I have often felt the same way with my Tallulah, if we could just get speech and communication, then everything else would be so much easier! And I have felt jealous of parents with verbal kids. Then along came my second baby girl Myffanway who we popped into intervention at 16 months- the moment we lost eye contact, response to her name and words she used to be able to say. Now at 33 months she has surpassed her 5 year old sister in speech and communication, but amazingly her behavioral, self regulation and control, repetitive behaviors and rigidity of routine are causing more daily difficulties than her sister’s did. I ven said to a friend the other day that I always thought if Lu could just communicate at the leve Myffy is now communicating at that everything would be easier because we could talk about things. But I was wrong. Life is very different for Myffy than for Lu, but still difficult. Even with preschool level speech I still often don’t understand. And even when she understands what I tell her, if she doesn’t like it, it’s still hard for her to deal with. She was just kicked out of a preschool for screaming for 3 hours straight and tearing the place apart last week and is being reassessed for a move from ‘at risk for autism’ to a full diagnosis in two weeks. There is a lot more to autism than lack of speech.

  8. Sometimes people don’t even take the things I say about autism seriously, and they say things like, “But you’re so much more high functioning than my son/daughter.” When I was a kid, I also had severe migraines. (By the way, research has shown that migraines are most likely to be caused by sensory issues.)

    I rejected all of those labels of high, moderate and severe when I first found out that “autism” was the name of the thing that I always knew I had that made me different in so many ways. It almost seemed like a divide-and-conquer tactic that society uses to make everyone on the spectrum feel much more isolated than they really are.

    The “autism spectrum” is not a linear spectrum. It is a multi-dimensional space. It is not like a color spectrum where red is high functioning and violet is severe autism and green and blue are somewhere in between. There are way more parameters than that.

    Here is an interesting study from last fall about such labels.
    http://weill.cornell.edu/news/releases/wcmc/wcmc_2011/11_09_11.shtml

    And here is a 60 Minutes excerpt about a guy who was diagnosed with “severe autism”, but as far as I can tell he is just socially awkward and happens to have been born blind. He doesn’t have an interest in many of the things most people are interested in, probably more from being blind than autistic.

  9. I still dont understand tha labelling. It seemed to me that it started off as “high funcioning’ was used to describe those on the spectrum who had a normal iq. Then “low funcitoning and moderate funcitoning ” crept into our language as well. I always felt that “high funcioning” was used by parents and individuals to differentiate and dissociate themselves form individuals with autism and a possible intellectual disability- and actually found it quite offensive- that it was not a measure of perceived severuty of actual autism if that is even measurable. We wont accep0tance of our children with autism by the wider community but I have found within the autism community their is sdly a lot of stigma attached to having an intellectual disability as well- parents often seek support groups for high funcitioning autism or do not even what their children to play with kids who appear to have an ID. I do not mean this as an attack on prents here but a comment on my own personal experiencesI still dont understand this labelling and am very uncomfortable with it. Does it really matter? Liz Websale (not Mark)

  10. This is a topic I have struggled with mightily over the years.

    Marisa has never been considered high, or even moderate, functioning. This was mostly due to the fact that she was (and still is) non-verbal. I’ll admit that I’m insanely jealous of other parents whose kids talk, and there stories are sometimes gut wrenching for me to hear. (I just fessed up to this the other day, remember?)

    I have been in the mode for years that if we “just” do “x,y,z” maybe, maybe, SOMEDAY she’ll be “normal”. I’m beginning to think that my perceptions and expectations do her no good. She’s a happy girl most of the time. She’ll obviously never live a “normal” life. But you know what? Maybe that’s not such a bad thing. Let’s face it, this world pretty much effin sucks. Maybe the fact that she’ll always be taken care of and not have to worry about the evils of the world isn’t so terrible. I’ve began thinking that perhaps her little soul is just too good, too sweet, for this world.

    That’s not to say that I’ve given up, or that I’ll ever give up. It just means that I can’t spend my days sobbing my eyes out because of how “low functioning” she is. I see higher functioning, verbal kids at her therapies all the time. Despite their more similarity to “normal”, they’ll always have a tough time in life, too – probably in part because people expect so much of them, being so “high functioning”. My girl gets to be who she is, and make no apologies for it, thank you very much.

    I feel like I really need to come to a point in life where I can just LET IT GO. Do the best I can for her, always, but not beat myself up beyond that.

    Meanwhile, I feel as if my poor seven year old has missed out on having me as his mother, 100%. I have always been so upset, depressed, and distressed about his sister that HIS needs have taken a back seat. He’s told me before he doesn’t understand why he “gets” to be normal, when his sister is not. The hell of it is, I can’t explain it, either.

    Obviously, I have alot of issues on this topic I need to work out!

    • Hi Angie, It’s good to see you here. Have you read any of Amy Sequenzia’s writing? I provided a link on this post, it’s the first one under “Related Posts” She’s a nonverbal Autistic adult and is extremely insightful, in addition to being a lovely human being. Also, if you have any interest, I would urge you to read Peyton’s book, I provided the link to her blog where you can order it from Amazon in the first sentence of the post. Click on the title of the book. The only reason I suggest these to you is because the common assumption is often that because someone does not speak or look at us or show any sign of understanding others they lack intelligence, do not understand and do not hear us, but more and more Autistics are now communicating and what they are saying makes it apparent that these assumptions are uniformly wrong. Carly Fleishman is another nonverbal now teenager, I believe who communicates through typing, she also has a website and blog with video footage of herself. It is well worth viewing.
      Anyway, I am glad you’re talking about this stuff.

    • Angie, I cannot stop thinking about your comment above. I don’t want to inundate you with links to blogs, but I so recognize myself in your thoughts and my life changed because I began reading blogs written by autistics. They are more immediate than books and they have the added benefit of being interactive in that I can leave comments and sometimes the blogger will respond. I remember the first time an adult Autistic reached out to me in kindness, it was like someone handing me the perfect gift and it filled me with hope. A hope I had been searching for but had yet to find. Maybe, just maybe one of these links I send you will open and hear something that gives you hope. Recently I began a correspondence with a nonverbal young woman, who like Peyton began communicating in her early 20s. Her blog is – http://emmasmiraclemusic.blogspot.com/2012_07_01_archive.html. Her mother reached out to me asked her daughter for permission to send me the link to her blog and posted it on here a week or so ago. More recently her daughter, also named Emma, commented on my blog. I commented back and now we are emailing each other. She just wrote me last night saying how important it is that parents understand they mustn’t talk about their nonverbal child while the child is in the room. I have asked her if I have her permission to quote her email, but I haven’t heard back yet, so want to respect her privacy until I am given permission. There is so much hope Angie. I know it’s really, really difficult and feels sometimes like we are grabbing onto straws that slip one by one through our fingers, but we must hold onto every thin wisp of hope that we can. Our children understand more than we think. I know this.
      Hang on Angie. And keep talking.

  11. Love your blog. Love your insights. For all who find these ideas of interest, I strongly recommend checking out the Autism National Committee – http://www.autcom.org – Great organization, great perspectives, awesome conference every fall (this year in Baltimore). It’s run by and for those with autism. I think you’d like it 🙂 Or try my blog: http://www.grandmacharslessonslearned.blogspot.com

    • So pleased you commented, I just went over to your blog and commented too! Interestingly I’ve been invited to present at the upcoming Autcom conference in Baltimore this coming October. I haven’t received the schedule yet, but am very excited to be participating as one of the few non-autistic speakers. It is an honor to have been asked. Perhaps we will run into each other then!

  12. I will definetely check out the blogs you recommended. From what I have read here, I trust your judgement. Hopefully they will help me.

    Marisa’s comprehension is hard to tell. I think she understands much of what is said to her. And we DO make the mistake of discussing her autism in front of her. We’ve been doing it her entire life. 😦

    I would be thrilled beyond words if Marisa would communicate – in ANY form. I don’t care how. She has a speech device but rarely says more than “I want chocolate milk” on it, lol. She has recently shown more of an interest in sign language, so we’re planning on pursuing that as well. Her speech therapist is all for anything that gets her communicating. I’ve long since given up on actual words.

    Coming here and talking with people really helps. I’m glad to have become part of the tribe! 😉

    • I’m getting out tom-toms and making whooping noises! I just want to say that when Emma began learning to read and write I had this expectation that suddenly, literally overnight she would begin sharing her inner most thoughts, she would tell me “secrets” about what it was to be her. She has not done that, but slowly over the last year she is speaking much more. The other night I spoke to her about how important it is that if people say or do mean or hurtful things she must tell me. She turned toward me, looked right into my eyes and nodded her head. I KNOW she understood. I KNOW she heard me. I asked her a great many questions and she sat with me answering. Some of the questions I had to ask in different ways, but she was there with me the whole time. She was listening and answering in her own cryptic way, but there is no doubt in my mind, she was completely present communicating as best she could. I know this will continue as she grows older, I know it will never be as quick as I’d like, but she will continue to develop her communication skills and I will continue to try and open my mind to what she’s trying to tell me, whether verbally, physically or by her behavior.
      And yes, it’s good to talk about all of this because doing this while feeling separate and alone is the worst feeling in the world! So glad you wrote!

    • Angie, Emma (not my daughter another Emma who is nonverbal) gave me permission to quote an email she sent me. Emma is nonverbal. This is what she wrote – “me name is emma and i am like peyton. i am 20 and started to be me two years ago. i was inside and
      couldn”talk with my hand or type or mouth.

      nikki is me ovarian cancer teacher. i just wrote my blog sadly and overwrought how life is not easy like i once prayed
      would be please i will write tomorrow if you would like. i am pleased if our emails teach people how to measure words or personal stories infront of
      people they think cant communicate.. .
      Emma”
      This is Emma’s blog that she started a little while ago. http://emmasmiraclemusic.blogspot.com/
      It, like she, is beautiful.

  13. I am still processing this wonderful post. I am so grateful to you for sharing your growth and experience. As I read through the comments, I felt, such relief and comfort. You have created a safe space with fine discourse.

    Thank you, Ariane.
    Lori

  14. My 13 year old son is significantly affected by both autism and epilepsy; that’s how I describe his differences. I hate the terms severe, moderate, and most certainly Low Functioning! These are meaningless to us- they tell you nothing about his intelligence, his sweet temperament and his incredible empathy. But because he is non verbal and lacking in many functional skills like dressing or complete toileting independence others would call him low functioning. This angers us both. He is so much more and has so many strengths that would never be appreciated by those who have refused to even consider teaching him academics or even speaking to him at an age appropriate level because of the label.

    Ok… I guess you know how I feel about that – LOL! PS- love the book too and love the Goddard family!

    • Hi Cherri Cary! I often think about how NTs would feel if everyone went around “labeling” them. “Oh he’s high functioning because he’s making a six figure salary, works 80 hours a week, but his kids and wife never see him.” Or she’s low functioning because she’s just a stay at home mom” or “she’s low functioning because she has a high powered career and her kids rarely see her” or whatever it is. Can you imagine? I know I wouldn’t like that very much and it too would be meaningless. It’s all subjective. So glad you wrote!

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  19. Thanks for writing such a wonderful post! I know that for my son Max, he seems to swing back and forth between designations, depending on the stressors/demands placed on him. While officially diagnosed as “Mild to Moderate” in terms of Autism, when he is feeling relaxed and safe, he can become quite talkative and interactive, leading people to question his diagnosis altogether (“Oh, but he can’t possibly have Autism!”). If the same people see him having a meltdown, however, biting himself, throwing things, totally withdrawn/unreachable, with his language lost, they AGAIN question the diagnosis (“Oh, but he must be severely Autistic, not mild to moderate!”). So unhelpful. I’ve come to think of Max simply as Max, a child with a lot of potential who is just beginning to grow into himself. Anyway, thanks so much for your post!

  20. Hi Ariane, I hope you don’t mind me posting, as a mum of an (possibly) Autistic child going through diagnosis. What a fantastic and honest post. This is something I struggle with, but from the other perspective, even though we haven’t been ‘labelled’ yet. I hear a lot of ‘she’s not very autistic’ or ‘she must be very high functioning, your lucky’ and I am lucky, lucky that I have such a wonderful daughter. However like in your post I believe Autism isn’t about how high/low functioning someone is/appears to be, it is about the struggle that individual person deals with on a day to day basis.
    My daughter certainly doesn’t feel ‘not very autistic’ when she punching herself in the crotch when she needs the toilet or when she screaming noises at us because we don’t understand. My daughter has an amazing vocabulary, therefore appears to others to be neurotypical, however she struggles using this vocabulary when she is stressed, anxious or overstimulated.
    It’s funny, as I’ve been reading your posts for a while and often see a lot of my daughter in Emma, however I had never realised until this post that Emma was non verbal.
    So I just wanted to say thank you for your amazing writing, as a mum who is still very much learning and finds it hard to talk about her feelings about her daughter.
    xxxx

    • Hi! So glad you commented!! Thank you. People’s ideas about my daughter are usually pretty uninformed, I’ve found!
      Oh and by the way, my Emma has some language, but another Emma, Emma Studer whose blog is on my blog roll is nonverbal and began communicating through typing a couple of years ago, she’s wonderful and her blog I highly recommend. I know. There are a great many Emma’s and it does get confusing! So glad you reached out!

      • Sorry I got your daughter muddled with another Emma, It is a great name! Always wanted to call my daughter Emma but couldn’t as already knew someone with that first name/last name combination and it would have been weird.
        Thanks for your reply 🙂

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