The Battle…

“It’s all well and good for higher functioning people who have autism to talk about how unique and precious their lives are and how important it is for everyone to accept their differences, but for families who are dealing with low functioning individuals, this is not their experience.   Those families are in an ongoing battle.”  

The above is a version of a comment I’ve read countless times over the years.

Aside from the curious conflation of the first part of the sentence discussing Autistic people’s sense of themselves, to the last part, which discusses the family’s point of view, as though the “low functioning” individual is incapable of having a point of view, there is no point arguing with anyone about their lived experience. However, do not make your experience mine.  This is NOT my experience of my child.  This is NOT my family’s experience.  This is not the experience of many, many families I know.  And do not assume this is my daughter’s experience either.  Just because this is the way you view your child or sibling or relative or the person you know, does not mean that is their experience of the world or their family member’s experience.

I do not assume that because I choose to celebrate my daughter, every family and every Autistic person will agree or feel the same.  Nothing is as simple as any one-word descriptor.  The ongoing battle I find myself in is with the inaccurate information about autism and Autistic people.  The ongoing battle is not my daughter’s neurology, it’s the misperceptions people have that they then apply to my daughter.  The ongoing battle is not about her at all, it’s about functioning labels, what people continue to say and believe autism means, how people view disability, the stigma attached and how people fear, reject and punish what they do not understand.

That quote?  That is exactly what I am battling – the idea that because someone cannot use spoken language, they do not have an experience of the world, the misconception that if someone cannot interact with another person in a way the majority of the population can understand or recognize, it means they are less than, unworthy, and therefore excluded.  Exclusion is the battle.  Non-acceptance is the battle.  Intolerance is the battle.  Hatred is the battle.  Prejudice is the battle.  Discrimination is the battle.  Misinformation, inequality, superiority, arrogance, ignorance, and all the ways in which people then behave because they believe these things and all the things they tell themselves that lead to any of the above being acted upon, that’s the battle.

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101 responses to “The Battle…

  1. I hate functioning labels. They ignore the fact that verbal autistic people can have difficulties out in society, working and surviving too and they ignore that non-verbal autistic people can be intelligent and can understand what people are saying about them! So talking about your child or relative as if they are a burden on society is so mean and frustrating for them. Not you. The person who makes those kind of comments.

    How about if we find ways to support all spectrums of autistic people while respecting their intelligence and presuming competence?

    Also it would help if i had an autistic friendly job writing novels and making plush vultures and not having to deal with public transportation and sensory issues.

    But yeah! Battle against ignorance!

  2. I agree with you in that I very much dislike the labels of low or high functioning. I also agree not to agree with people who objectify other humans, and to portray alternate existences as some kind of torture.
    Before I observed hundreds of persons with ASD and their families, I held lots of notions about what families should do or not do to raise their children, optimally. But after I witnessed first-hand many “ugly” realities – like grown sons who suddenly fly into rage and beat or nearly strangle their mothers; or adolescent sons with perpetual hard-ons, who drop their pants in public; or students who scratch, bite or spit their way out of learning situations….empathy grows for existences which I personally have not experienced, and understanding grows that every child and every family has their own set of struggles and limitations. Rather than making battle, I think understanding and caring for each other, despite differences, should be the goal.

    • My objection is when people who are vocal and very publicly so, make statements about “families with low functioning individuals this is not their experience. Those families are in an ongoing battle.” they are grouping a great many families into a statement that is NOT representative of that family’s experience. But people read comments like that and just assume it is.

      Additionally and often, if I say this, as I have in this post, then people tell all kinds of stories about all the people they know or their own children as though proving that I must be wrong. I am not suggesting that no one has challenges. I am not saying parenting is one joyful day after another of nonstop celebration either. What I AM saying is that I don’t want to be grouped in with people who insist that their experience is MINE! It isn’t. Just as mine, very obviously, is not theirs!

    • What about the “ugly realities” that fuel an autistic person’s rage?

      • Yes, that. Some of these people who are described as randomly, unpredictably violent are treated as non-people on a daily basis. Very, very basic questioning usually reveals some entirely likely and predictable sources of rage.

        Any non-disabled person, if treated in many of the ways that autistic people often are, including by people who care about them and don’t intend to harm them, would be justifiably angry.

        • In some circles, I have an un-live-down-able reputation as “the F you person.” I have tried to explain that I only get that angry when people are being horrible to me, but it is no different from grade school: the horrible behavior is sophisticated enough to be invisible to onlookers, who only see my barely-controlled rage and judge me as an aggressor and attacker.

          I have worked REALLY hard on anger issues and made tremendous strides, but the people around me were also growing and maturing . . . and without a developmental delay. So the social gap that was already huge in childhood is unbridgeable now. Bullies had their way with me in childhood and exponentially more so in adulthood . . . which is one reason I am such a hermit. I am an extrovert who behaves like an introvert because the world us such a hostile and sensory assaulting place for me.

          I sometimes think it would be easier on me if I were an introvert, because the self-protective behaviors would be natural to me. It is doubly difficult (in my opinion) to be an extroverted Autistic. Like the painted bird, I keep responding to social urges that put me directly in the line of fire of those who don’t need to attack me because they are so skilled in luring me into destroying my own credibility and social standing.

  3. Considering i have one of each i speak as a parent from both camps. Functioning is highly relative, and if they were to be used at all, might be more useful to split the labeling into the million characteristics involved instead of slapping one on a whole being eg my oldest would be HF in self care and LF in self regulation, and my youngest would be the reverse. However this would not solve the issue that is comparing them to the allistic “norms” in the first place. I have one child who has been overestimated all his life, and another who will likely be underestimated all his. Both assumptions are dangerous, degrading, defeating, and equally frustrating to both myself and my boys. Ugh

  4. There is only one word that can describe an autistic’s functioning: different. They may do less for themselves on a given day, but more on another. Different is the only way that functioning should be brought into the equation if autistics are to be respected–and don’t try and change that.

  5. “Pain is inevitable, suffering is optional.”

    There are plenty of difficulties in life. Parenting is hard, but “childering” is harder. Parents usually have some experience in navigating the complex social expectations of the world. Children must gain that experience with each passing day, hopefully with the guidance, support and unconditional love of parents who put their children’s needs ahead of their own.

    But there are a lot of parents who aren’t like that. Mine for example. I was taught from birth that my obedience and subservience were more important than my own needs and desires, or personal considerations. When I didn’t do what I was told to do, or didn’t do it fast enough with a “good attitude” I was yelled at. Punished. Spanked. Slapped in the face. Called awful names. Verbally abused. Degraded. Humiliated. And that happened nearly every day of my life until I left home at the age of eighteen.

    My parents constantly reminded me how difficult I was to cope with. How hard I made life for them. If I would only try harder, work harder, move faster, then their lives would be so much better. Their lives.

    Me? I didn’t really matter.

    I waited a long time before becoming a parent. For years I swore I would never have children, perhaps because I was afraid I might behave like my own parents. And no child deserved that. When I met Ariane, something shifted monumentally in me, and I was suddenly eager to be a dad. I was 40 years old. Maybe I was finally emotionally mature enough to handle the enormous responsibility of parenting. I was ready to put someone else’s needs ahead of my own. Because for me, that’s what parenting is about. Service. My children don’t exist to fulfill my expectations, or make me happy. They exist in order to experience life and fulfill their destinies.

    It is indeed hard to be a parent. I empathize and sympathize with all the parents who feel overwhelmed, who don’t have the resources, or support to cope well with these tremendous responsibilities. I know life is hard for you. But trust me, no matter how hard you think you have it, your children have it harder. They sense your frustration, your discontent, your fear and panic, your anger and rage, your sadness and depression and hopelessness.

    And quite likely, they feel themselves to be responsible. Maybe they are even told they are responsible. They feel guilt and shame. They try harder to make you happy. To not be so upset with them. Because they have learned–deep, deep inside–that they are “the problem.”

    I’m talking about all children here, not just autistic children. For autistic children, multiply that angst level by a thousand. If you are autistic, you live in a world where so many people are telling you that you are broken, that you need to be fixed, that you need to be trained, conditioned to “act normal.” If you like to spin around over and over, or bounce, or rock back and forth, you are given the message, sometimes spoken, sometimes not, that this is “wrong.” And therefore, by extension, there is “something wrong with you.”

    if you are non-speaking, or have difficulty with speaking, or with other physical issues, life is even harder, because you are being told that there is something REALLY “wrong” with you. Meanwhile, you’re trying to live in a world of “talkers” that constantly underestimate your intelligence and capabilities, who treat you like babies, who give you dirty looks, or tease you, or bully you.

    You are put to “work” when you’re only two or three years old, or as soon as it has been decided that something is “wrong” with you. Early Intervention is required, in order that you be “fixed” and/or “rescued.” This is not optional for you. It is mandatory. You have no choice in the matter. And if you can’t speak, you can’t even complain. So it begins. The endless conditioning. The continuous demand to stop being who you are and “fit in.”

    And nearly the entire world of medicine and science and education is conspiring to maintain the status quo of the deficit model. Autism isn’t defined by all its wondrous capabilities, but by what is seen as lacking. Autism Speaks continuously fuels the bonfire of “wrongness” with every dollar they spend.

    And it has to stop. It is wrong. It is life-killing and soul-killing. And if you, as a parent, can’t see that this is the reality your children are living with every second of every day, you need to open your eyes and ears and heart.

    I so wish it hadn’t taken me so long to wake up. I so wish that i could erase all the damage I did to Emma, like subjecting her to the torture of ABA when she was only two years old. But I can’t change the past. I can’t take it back. What I can do, is speak the truth of what I’ve learned to whomever is willing to listen.

    One of my favorite websites is “I Fucking Love Science” because I really fucking love science. Here’s another think I love:

    I Fucking Love Autistics.

    • You are beautiful, Richard. I am so happy I know you and your family.

      • The feeling is totally mutually. I always look forward to reading your comments here and always get so much from them. Thanks for being a part of our world ❤

    • “My parents constantly reminded me how difficult I was to cope with. How hard I made life for them. If I would only try harder, work harder, move faster, then their lives would be so much better. Their lives.” – Cogent, poignant and the reality for many of us. Thank you for voicing this. Your words resound in my head with palpable physicality.

      • Thanks so much hop-scotching bunny 😉 It’s amazing how many people automatically assume that most parents are self-sacrificing saints. How they suffer so much and give so much. Some parents are horrifying. Some parents kill their kids. Many, many parents constantly bully their children and try to control every aspect of their lives — as if their kids were hand puppets. And the parents who truly care, who understand that parenting is an act of service, aren’t looking for medals of valor. It’s the reason they wanted to be parents in the first place.

        • 🙂 I couldn’t have said it better, Richard, and on a ‘less verbal’ day for me such as today, your words are just all the more eloquent on my behalf (as I am sure they are for countless other autistics)!

          • Thanks bunny. As Emma has told us (paraphrase): “Words mean a lot more to you than they do to me.” Being verbal is highly overrated when compared to being wholly present in the the moment, fully experiencing the world around you. I’m a huge talker (though not a “weather-talker”) Emma teases me about that, and my incessant questions. But curiosity and conversation are as thrilling to me as performing is for Emma.

            Speaking of which, Emma threw a dinner party tonight for some of her friends. She also spent a very long time typing in conversation with a dear friend of hers and former teacher. She was clearly exhausted after all that typing, so she put on a show for us and sang and danced tunes from “Aladdin” It’s easier for Emma to sing than speak, and she was really belting it out. I didn’t ask, but I’m willing to bet that Emma had a lot more fun singing and dancing and making funny faces than speaking or typing.

            • Emma is so beautiful, and I am very encouraged by her insights. I love her performances, they communicate so much! I am a performance artist too, and that is such a great channel for expression and reciprocity. Thank you, Emma, and Richard and Ariane, for sharing your journey!

  6. I experience function labels as a tool or weapon used against me. One government agency says they can’t help me because I’m too high functioning and another says they can’t help me because I’m too low functioning. Now no one has to help me and the government saves money. A boss doesn’t want me because he thinks I’m too low functioning, but a parent of an Autistic child rejects my attempt to help her, on the grounds that I am too high functioning to understand her child . . . but if she thought I were as low functioning as her child, she wouldn’t listen either, because when people call someone low functioning, they are saying they have no value and when they call them high functioning, they are saying they have no struggles.

    Every one of us Autistics is valuable and every one of us struggles. So function labels don’t mean anything and should be thrown away.

    • Hi Sparrow – may I quote you/this on a page of a website I’m building? It’s for parents/anyone who want to know more about autism and is a doorway to AUTISTIC voices/bloggers and neurodiversity friendly parents/professionals. The website is under construction but the facebook page (Autistikids) is up and running – full of links to the same type of posts. One of the pages is “We are like your child” (I’ve asked them if I can link as well), and your words here so much need to be heard. Thank you.

      • I haven’t responded yet because I am very unsure of my answer. Usually when I say “yes” to a total stranger in a situation like this, I end up feeling used and harmed. I just wanted to be polite and respond so you don’t think I’m ignoring you, but I don’t know who you are and I feel very uneasy about the request as a result.

        • That’s TOTALLY understandable.

          If you like, can I save it, and when the page is ready I can let you know. You can check it out and decide if it’s ok.

          If it’s all just too much, don’t worry about it. It’s totally not your responsibility. You have a wonderful way with words. I’ll do my best to do justice to this issue. Thank you!

          • I would definitely feel better — or at least more decisive — after becoming familiar with the web site.

            Also, I think I may have written this in the past, in an essay on my blog, along with more thoughts along the same line. I’ll have to look through my writing to see.

            • Thank you, Sparrow. If you find it, that’s wonderful, but don’t spend extra energy on it. I follow your blog and bought your book too. Thanks for sharing your experiences.

              I’ll keep you posted about the site. 🙂

  7. And the ironic thing about this whole issue, is that in squabbling amongst ourselves, thinking it a zero-sum game where my family’s gain is your loss, is that we DO NOT use our *strongest case* to attain the services we need! If we are called ” low-functioning”, the public does not discount our need but *does* discount our ability. If we are called “high functioning”, the public does not discount our basic competence but *does* discount our need.Together, combined, we bring both * the need and the ability to succeed*. Apart, we get the bureaucratic shuffle. Esp. from people who hate,fear,and ignore us. It saddens me very much when families discount non-verbal autistic people. I don’t know how to support them. All I can do is pretend not to notice so they don’t get embarrassed.

  8. usethebrainsgodgiveyou

    I think that we all should have seats at the table, but both parents AND autistics need to reserve judgment. There is no room at the table for name calling and accusations. That’s what Jodi V. said on another blog. I thought that was wise. When we think we are judged, we negate the message.

  9. I call my son mid-functioning, because he can speak, but he doesn’t understand a lot of what he hears and he has a very hard time getting his words out. But it’s misleading, I mean his appearance is misleading, most people don’t get that there is anything out of the ordinary to him and I think — are you even seeing him? We all struggle. High, mid, low. Autism is sure no picnic.

    • I used to think that Emma didn’t understand a lot of what she heard, because she did not respond in any way. I made so many assumptions based on this belief. It wasn’t until Emma began typing that I realized that Emma understood EVERYTHING. If you take the time to watch the video of Emma presenting at the I Care 4 Autism conference last week (https://emmashopebook.com/2014/07/07/saying-one-thing-meaning-another/), you will get an undeniable demonstration that Emma is listening to everything and understands everything, even though she appears focused on other things. You will also see that she is speaking about non-related things while she is typing (she calls in “multitasking”). If I had presumed Emma’s cognitive competence from the moment she was diagnosed, her life and ours would have been immeasurably better.

      We all struggle. It is the human condition. Autistic people struggle more than most because all of society is defining autism as a collection of deficits. Talk about a stacked deck. Being constantly underestimated and misunderstood, because the entire world judges you by your outward appearance and behavior is brutally difficult. I feel very lucky that Emma is so compassionate and forgiving, because I underestimated her for years before I knew that she could read and write and had the most amazing mind that I have ever encountered.

      When in doubt, presume competence.

    • And what sort of mom are you? Mid-functioning? or maybe high or low-functioning? and how would it feel if we all voted on what functional parental label fits you?

      Please know that I am not at all trying to be mean to you personally, but just using the example to try to bring further attention. I think people do the best they can with what they know. Then, when we know better we can do better says Maya Angelou. I am hoping that if people would just consider having the tables turned such as the example of having functioning labels for our parenting how would we feel about that and would it ultimately serve any good?

      As a parent I would need to say yes to the question of whether I am high, mid or low functioning.

      As an autistic I was labeled low functioning many years ago. Today I am a mom having raised three children,hold a master’s degree, am an author, international speaker, run my own business, and am just as autistic as ever. Turns out the functioning labels are not only unhelpful, but indeed very hurtful.

      Thanks so much for listening to all my thoughts mid-functioning mom. Perhaps we will be new friends.

  10. I understand your point, I really do – but I know of some families’ despair and worry. Like my male friend who desperately ran after his teenage autistic daughter who took all her clothes off and ran through town. He ran after her because she does not pay attention to traffic and he is sick to think what other not-so-honorable people might do if they found her. He’s a good father who knew what he looked like to a passerby – a middle aged man running after a naked teen. Is it wrong for a worried parent to feel this way and in that moment not celebrate?

    • I am glad that he ran after her. Thank God for parents who will brave disapproval and misunderstanding to protect their children.

      • As opposed to what Mom? Leave them to wander around town naked and alone? If it was a non-autistic child who ran away naked, the result would have been the same. Protecting your children comes with the job.

    • I’m quite sure it was awful for that dad, because i’ve had some highly traumatic and very public scenes with Emma too. But I find it interesting that your horror and sympathy seems to rest wholly with the poor parent who was humiliated and traumatized.Can you imagine how the girl felt when everyone was staring at her and gasping or calling her names? Can you imagine how she felt when her father found her and had to restrain her physically in order to bring her back home. Can you imagine how humiliated and traumatized she was by this event?

      • Thank you especially for this.

        • Yeah, what Dani said! It gets hard to breathe when no one thinks about our side of things. Every single thing I’ve ever done that embarrassed or frightened or upset someone else was very hard on me, too.

          I once asked my boyfriend why he is still with me when he has had to go through me hitting myself, banging my head, having police at my door, yelling at him, losing my speech for hours or days. He said he is still with me because he loves me, because I’m kind and loving and genuine, because he knows I can’t help those things, because I try harder than anyone he knows, and because he knows that no matter how uncomfortable he is in those situations, it’s exponentially harder for me.

          And this is why he is my boyfriend. He looks at me and sees autism, he looks at me and sees Sparrow, he looks at me and sees love, he looks at me and sees struggle . . . and he knows it’s all the same, not a “real me” and an “autistic shell” . . . And he really sees me and tries to understand me, instead of making everything about him.

          I only hope I’m giving back as much glory and joy as I’m getting from him.

      • Same here. I’m with Dani and unstrangemind. I think you may have spoken for masses.

      • this, this, so much THIS! thank you, richard!

      • I love Richard Long. If I ever run naked through the streets I hope it happens in his neighborhood. As an autistic I can never have enough people on my side. May I count you as my friend?

        • You may indeed count me as your friend and count on me to watch your back. And if you ever run naked in the streets in my neighborhood, I’ll carry your coat behind you or throw rose petals in front of you — whichever you prefer.

          • Well maybe hold my coat on front of me so perhaps my unruly body might run right into it. But if perchance my body misses then point at me and yell loudly, “look at her beautiful birthday dress'” people have proven to think strangely about me so I am thinking it won’t take much encouragement to convince them to admire my beautiful birthday dress! HHa They believe wild tales so why not add to their make believe a little on the fun and positive?

  11. Reblogged this on Nature Study in the City and commented:
    The Battle, Reblogged from Emma’s Hope Book
    “the misconception that if someone cannot interact with another person in a way the majority of the population can understand or recognize, it means they are less than, unworthy, and therefore excluded. Exclusion is the battle. Non-acceptance is the battle. Intolerance is the battle. Hatred is the battle. Prejudice is the battle. Discrimination is the battle. Misinformation, inequality, superiority, arrogance, ignorance, and all the ways in which people then behave because they believe these things and all the things they tell themselves that lead to any of the above being acted upon, that’s the battle.”

  12. Another to-the-point and well said article, Ariane.

    I am high, I am low. I am the speaker and the spoken. My experiences are my own and my family cannot fully understand them. My family members’ experiences are their own and I cannot fully understand them. I can, however, attempt to be open and accepting; sympathetic and nurturing. I can hope for the same. Clinical labels can never be applied as more that a quick-assessment of a broad range; they don’t fit individuals. I have never met a fellow autistic who is exactly the same as me, nor have I ever met another human being who shares my exact views and qualities. Denouncing or expecting others’ life experiences to be reflective of your own is counterproductive. Focusing on an outreach that is accepting for all is key. Also, by saying your son or daughter doesn’t have a voice or cannot express themselves is taking their true voice away from them. They may not speak your language, but they are speaking nonetheless.

  13. Well said:) my son was non – verbal until 4. He would try and tell us how frustrated he was that he felt dragged around to activities without anyone asking him how he felt about it. If he resisted being led away they treated him like a bad boy and not just a child who wanted a drink from the water fountain or who has a hard time in crowded hallways. I still can’t believe to this day that folks will talk about him as if he’s not there or cannot understand. The worst is the junior kindergarten teacher thought she would make life easier for him by shortening his name so it would be easier to say and spell. He is going into grade 2 in sept and all the teachers and kids use the shortened version. Whenever he meets a new therapist or friend he always tells them to use his full name. I still can’t believe they changed his name without asking us because even though this can happen at school….other kids can talk and advocate for themselves.

  14. Marie Brennan

    All behavior is communication. That is one thing I have learned in living with our daughter. Behaviors can be a key to understanding, if we look at them and think, “What is really going on here?” instead of,”If she does that one more time I’m going to go nuts.” we can learn a lot!
    Parents who are challenged by their kids, need other parents who can be sympathetic, understanding, and non-judgmental. The lives of Autistics can only be helped when the people closest to them are tuned in and accepting. That is a journey that takes time, education, and support. Just as Autistics need to be accepted for who they are and where they are on their path in life, Parents need that same respect and care. If the parents don’t get it, The autistic child will suffer. A tuned in parent is the autistic child’s best hope. It will probably help a lot if those of us who believe that we have the parenting of our own autistic child down pretty well, could volunteer to provide respite care for parents who are still struggling. I have done this. It’s an interesting experience. It made me feel very humble.

    • Thank you for this. As a parent who is still experiencing the ‘battle’ as critiqued here, I read both the post and the comments and was left feeling incredibly lonely and isolated. This provided some comfort.

  15. I think within a broader context, what’s happened here when it comes to autism is all about fear. And Arianne, you have discussed this a lot before when you wrote about the organization Autism Speaks. Look at the last 10-15 years — the numbers in autism have skyrocketed. But are those numbers really real? We all know that autism (pre Autism Speaks days) was a very rare category of human existence (notice I did NOT say disorder!). So in today’s world, the kids are placed into High functioning versus Low functioning categories. Really? Did that exist 15 years ago? Or is those categories that was created by whomever to alleviate the fears of parents as to the “capabilities”, and thus future, of their child. Its complete nonsense. Human kind has not changed all that much in the couple of decades. I can’t stand when people say that their child was cured of autism after spending tens of thousands of dollars: they never had it to begin with. And until they can come up with a definitive, non-subjective way to diagnose autism this fear-based narrative as to categorizing your child as high functioning and low functioning will continue (unfortunately).

    Arianne, I truly believe that you are on to something great. I hope that you continue to bring awareness of the ABILITIES of genuine autistic children, by showing them just how to do it — and in a genuine, and using your words — presumption of competence kind of way.

    • You obviously think you DO know a definitive way to diagnose autism, since you have just categorically stated that a significant number of people who have been told they have autism do not in fact have it – you think the psychiatrist just made it up to relieve their parents fears! Presumably when you say ‘genuine’ autistics you refer to those who are non-verbal, as opposed to those who are verbal ( ie, people who would usually have been diagnosed with Aspergers prior to the latest iteration of the DSM.)
      If I have misinterpreted your views, please correct me.

  16. Thank you for yet another powerful post. I will be reblogging this for my readers. An important issue that needs to be aired and developed.

  17. Also like.. they only care about calling us high functioning to deflect criticism.

    When they’re talking about what they want to do to us, they make it damn clear that they mean *all* of us.

  18. Reblogged this on bunnyhopscotch and commented:
    Please read this poignant post from Emma’s Hope Book!
    Although my diagnosis in my early 40s was immensely cathartic in a positive way, I have nevertheless struggled with functioning labels and pathologising approaches. I was labelled ‘extremely high-functioning,’ but that label rendered me ironically more hapless because I felt incapable of asking for support or help for my ‘low functioning’ days, of which I was slowly becoming more and more acutely aware. The labeling denies a very cogent, palpable and thrillingly creative part of Self, in deference to performing to the whims of Other, it keeps my mind tethered to the obligation to perform to neurotypical demands, competing alongside neurotypicals in a system that conveniently refuses to embrace and include my differences in functionality. Though there seems to have arisen an unpleasant culture of resentful ‘superiority’ among some ‘high functioning’ individuals and their social networks, most of us, who contemplate and perceive more deeply our existence and embodiment, are painfully cognisant of the fact that these labels shut us out from any true embracing, reciprocal inclusion. The fact is the labels and pathological approaches are merely excuses for the hostile sector of the neurotypical system to further hem us in and shelve us into convenient social and mental spaces wherein we can be ‘processed.’

    Thank you for a wonderful post, Ariane. We need to keep hoping, reaching, speaking and advocating for a better and more embracing neurocosmopolitan world, and it looks like this effort will have to begin with us in the autism dimension.

  19. Well said! and agree 🙂

  20. Ariane is absolutely right. Her own daughter’s words about how she feels should be enough for people to learn that you can sympathize with families but if you don’t see that what we have to go through when our body and mind are in dissonance, maybe you should read Emma’s words again.
    As a teenager, I used to be left in the school bathroom alone. Then I would get up and walk around with my pants down. Then I was mocked and chastised. My body is uncooperative, pulling pants up requires more motor coordination than I have, I was afraid of being alone and have a seizure, nobody bothered to ask me why. I could type, but the decides didn’t always want to let me type.
    I am sure my parents were mortified. But they got it. They knew to talk to me, listen to me, treat me like a sentient being.
    We, deemed “low-functioning” are seen as not able to be. Just be. So our families need to declare how we feel.

    • Amy I am glad you are my friend. I am glad we have each other’s backs ~ whether pants are up or down. Sorry for the gallows humor if you are not in that space, but sometimes it helps me get through. People put too much social assumption on nakedness and many other things and yet some of the same people feel justified in presuming our incompetence so never even think of asking us why we walked out of the bathroom without pulling our pants up. Like REALLY……if anyone else did that someone would surely ask them what was up, but autistics…..many never even contemplate asking, but instead righteously assign asinine meaning, patting themselves on the back because somehow their feelings are the feelings that matter and the point of view from which the story is told.

      Again, I love Richard Long this day!!!!

      • Mwah Judy ❤ I love what you said, "People put too much social assumption on nakedness and many other things and yet some of the same people feel justified in presuming our incompetence so never even think of asking us why we walked out of the bathroom without pulling our pants up."

  21. A friend shared this article on her Fudgebook page. One comment that was posted in response, I have redacted the name of and saved on my WordPress account. Because there is literally no better way to put it for us “hiiiiiigh functioning” people. It is at http://wp.me/a2iISl-NM and I strongly encourage everyone to read it.

    I will elaborate further from my personal perspective as a “hiiiiiiigh functioning” adult who:

    * needs medication to awkwardly facilitate sleep at night
    * is currently in constant upper respiratory distress
    * has been employed a total of 18 months out of near to 18 years of his adult life
    * cannot get appropriate help/advocacy/assistive services for the fact that he does not speak normie to save his life, and he means that latter clause in the most literal sense now
    * spends every night and day in fear of how much worse it will get if he lives another thirty years

    I think all of the above says it best, but I would like to end with a question to the people who refuse to help or listen to myself, or girls like Emma, because we are “toooooo hiiiiiiigh function!” (sing it out like Bon Scott being sarcastic). Exactly who do those people think they are? And what fantasy land do they live in that they honestly think being “tooooo hiiiiiiiigh functioning!” means we are exempt from being abused as children, neglected as adults, or ailing physically when the need for help is ignored for long enough?

    I expect this two-part question will never get any kind of answer from them, leave alone an honest one. In fact, ASFNA’s usual tactic when asked questions like these directly is to pretend a different question was asked, and answer that different question instead.

  22. I think labeling is hurtful, and some parents cling to it like it’s part of their identity too. They need to put it in a neat little box, and resign themselves to what reality is and will be with their child. It’s for nobody else to decide what hope or expectations you can bring to your child. Your child is only living up to what is expected from them, dream big, teach them how they are able to learn, and help them create a beautiful life. It’s a journey, and you must learn from it, that is why we exist. I love the quote “whether you believe you can, or you can’t, you’re right” Happiness is a choice. It’s how you cope with struggles that makes your life what it is or isn’t. I am a mom to the most amazing little girl, who the doctor says is “moderate to severe”, whatever that means anyway, and I am grateful every day that she is my daughter.

  23. helenastephenson13

    Reblogged this on Making Waves Making Changes and commented:
    I love this so much!! Right on!

  24. usethebrainsgodgiveyou

    Unrelated: when Richard talked about Emma loving to sing…It reminded me of Ben singing whole songs long (5 years) before he ever had true conversation, and my sister mentioning “perfect pitch” at the time. As a toddler, we were at my nephews First Communion. I guess Ben was getting tired because at most solemn time, when you could hear a pin drop, he started singing “Hit the road, Jack, and don’t ya come back no more, no more, no more, no more…”—so we hauled a$$ out of there real quick.

    We have so much to learn from each other.

    • usethebrainsgodgiveyou

      What I mean is…the similarities in development are striking. It has to be a clue as to what our children need. (But not what they NEED to do in order to fit in, or what they need to change. It’s the freaking grownups that need to change, I know that much.)

    • Oh how I love this!

      Amazing how we are told and taught what “communication” is and then there is this other communicating going on that we might miss because it isn’t in the form or with the words we are expecting…

  25. I understand that point (at least I think I do) but perhaps I misunderstood what was meant by ‘battle’ in the quoted portion of your post. I interpreted that to mean the battle of trying to have a better understanding of the wants/needs of someone who is non-verbal but where an effective means of communication is yet to be found.

    • Considering my completely out of sync reply, I’m starting to wonder about my level of understanding in all sorts of ways!

    • I trashed my comment before seeing that you’d replied to it. I did so because I’m tired and feeling cranky and thought that what I wrote wasn’t kind or very helpful, particularly to someone who had just said they were left feeling lonely and isolated.

      The quote that I was responding to in this post was written by someone I’ve never met but was alerted to his comment and is all about how only people who are so called “high functioning” (which is such an unfortunate label that has come to mean someone who can use spoken language to converse and someone who may be quite brilliant, but cannot, like my daughter, is thought to be “low functioning, or “lower” comparatively speaking) anyway his comment was about how “high functioning” people think that their neurology is a difference, but that families who have a child who is not “high functioning” (like my daughter) those families are in an “ongoing battle”.

      So I was objecting to that, because while we once were parents with that mindset, we no longer are and I really dislike when people lump all families into one person’s or other people’s experience and then decide it’s perfectly okay to speak for all of us, not to mention my daughter! Having once been engaged in a war with what I believed was my daughter’s autism and having come to feel completely differently, i.e. that having an Autistic child who cannot converse using spoken language is not a battle, and in fact the battle I now find myself having to wage is all the inaccurate and really destructive things people say and believe about people like my daughter.

      In this blog I try to offer another perspective. It’s the perspective that I wish I’d been given when I first received her diagnosis, because truthfully, it would have changed everything. Just everything. I once felt completely isolated, lonely and incredibly depressed. But what I found, what I learned was that I was responding to the very bleak things I was being told by non autistic people, many of whom are in the field and considered “experts” and yet who are wrong as my daughter and so many of my Autistic friends have enlightened me and continue to.

      I’ve written about that dark period a lot throughout this blog – https://emmashopebook.com/2013/06/19/walk-toward-the-light/ – but really the thing I wish for all parents who are feeling sad and lonely is to know that it doesn’t have to be that way. That, in fact, you aren’t alone. There are so many of us who’ve been where you are, (I’m projecting my own stuff onto you here, so forgive me as I cannot actually know where you are, but maybe you’ll want to say) and who have found another way to think about all of this. What I do know is that all the talk about autism by a largely non-autistic population is doing a great deal of damage and I have found my battle is not about my daughter’s neurology, but about all the misinformation that abounds. I could go on and on, but will instead just stop.

      I’m sorry I was so grumpy in my first comment. I think Marie said it nicely and I’m glad you found comfort in her comment. I’d like to say something comforting as well… and perhaps now, I have. Anyway, I hope so.

      • You certainly have and thank you for doing so. Your ‘projection’ is pretty much spot on. My family is currently where your family seems to have been in 2010/11 (I’m currently reading your blog from the beginning having only just discovered it) and I see much of myself and my family in your older posts. I’m currently experiencing some internal conflict right now as to whether we’re doing ‘enough’ and it’s making me somewhat sensitive (lots of tears recently). Thank you for coming back and providing a little more insight and encouragement.

        • Beth, I don’t have much to say about parenting, because I’m not able to be a parent, but I wanted to send you a “thought hug” and tell you that if you’re worried about whether you’re doing enough, that’s a sign that you care deeply and — no matter what you are actually doing — you are doing more than so many other parents. Trust your instincts as a mother. Trust your child. Don’t let anyone convince you that something us beneficial if your mother instinct tells you it looks like torture. Trust your child’s inner wisdom. Never believe anyone who tells you your child is not aware of what’s going on. Don’t believe that speaking is worth anything and everything. Lots of Autistic adults type to communicate and gave happy, productive lives. The most important thing you can do for your child us to make sure they know beyond a shadow of a doubt that they are wanted, loved, valued. Don’t assume they know you love them; tell them and show them every day. They will learn more if you do what you can to make them feel happy and safe.

          Like I said, these are not the words of a parent because that’s something I can’t be. But these are the words of an Autistic adult who remembers how hard growing up was. These are the words of an Autistic adult who us rooting for you and your child. You *ARE* doing enough! You are learning and searching and living your child. Just keep doing those things — especially the loving part, which I’m sure you’re very good at! — and everything will sort itself out. Autism isn’t the end of the world and it isn’t a death sentence. It’s just different and often there’s no paved road like there are fir other parents. You spend a lot of time having through the jungle with a machete. But don’t let it panic you. It will all be okay. I promise! And here’s your hug: *hug* hang in there! You came to Emma and Ariane’s blog — you are in one of the best places you could be!

          • (Sorry about all my typos! It’s dark here.)

            • Thank you, I loved your reply. And you’re right, I love my daughter without condition and she shows me every day that she feels the same way. She is ridiculously affectionate, goofy, happy and silly although she also has some significant struggles (puberty/menstruation being some of the latest).

              She’s been learning to type at school over the past two years and has a talent for it. She’s also recently started using proloquo2go but so far, we haven’t seen any spontaneous communication that isn’t verbal. She currently uses somewhere between 50 – 100 words, some which are easily understood and some which are not.

              We’re getting there but I often wonder if we do enough at home. We’ve tried to keep home as her ‘safest space’ where she gets to be who she is freely. This means we’ve steered away from any at home educational work. While I think this has been the right track in terms of her emotional happiness, I’m now wondering whether this has been a detriment to her overall well being in terms of being more easily able to negotiate the NT world.

        • Aw… (((Beth))) I’m joining Sparrow (💕Sparrow!!) in giving you virtual hugs.
          That awful feeling of not doing enough is just horrible. And in addition to that is the even more awful feeling that you don’t know what “enough” is, or you’d do it.
          I think Sparrow summed it up nicely, the very fact that this thought has entered your mind is a testament of your deep abiding love for your child.
          Oddly, it was when we stopped doing so much and stopped believing all that we were being told by the professionals that we were all able to relax and as a result everyone’s stress levels went way down. But this goes against everything we parents are told by all the people who seem so sure they know what autism is and how Autistic people are best served by their parents.
          The most helpful and hopeful people I know of to help me parent my child are those who actually share her neurology and my daughter, NOT all those so called autism experts who seem so convinced they know all about autism and therefore my daughter.
          Keep talking. I promise, I and others will reply. And please know – You are NOT alone. You don’t have to feel that awful feeling that no one understands, that no one can possibly help or that this is how you will always feel.

  26. Very enlightening. All this is out there but no answers from the so-called NT world, very, very sad indeed!

    • There are some in the NT world who are listening, but many, particularly those in education and medicine who are having to undo years and years of training and information that is incorrect.

  27. I’ve been reading Ido’s book to M (and his younger bro, when I can get *him* to sit still) – and as we go along, I’m certain that he identifies with a lot of the anger that Ido is talking about, though I find myself stumbling over the moments when there’s a lot of talk about suffering from autism and how much he hates certain aspects of it. I know there’s a validity to it, obviously, like how the rest of us get fed up with our own bodies, appearance, etc. – but I don’t know yet if that’s how M feels about being autistic…having read so many other takes on the situation, I wonder how everyone else feels about it. (Personally, I am a socially anxious person, and it seems to be getting more pronounced – so yes, I dislike how I automatically obsess about conversations with people, hyper-analyze every word I said, and cannot deal with phone conversations…the written word is my refuge too)
    My husband also is stuck in the labeling machine. I was telling him about the book and about Ido, and got the question of where Ido was at. After saying that I don’t have any interest in labeling, I got the annoyed response, which is indicative of where he’s stuck. I keep telling him about Emma, about all the other people I’ve read on this blog and their amazing insights and commentary…but I can’t drag him out of the static vision of who our kid seems to be just yet.
    I’m going to sign up for the ACETC intake, and maybe someday we’ll get to see Soma. I’ve tried on my own to start the rpm, but all these years of M being prompted to talk has got him still trying to verbally answer questions, and I don’t know how to help him beyond it. For now, M and I are going to be salmon swimming upstream to the promised land, and I just have to keep faith that everyone else will jump in the current with us…!

    • I was sent Ido’s book and did not read it for several months because of the subtitle. When I finally did read it, there was so much that was incredibly powerful and so I reached out to Ido and his parents. (A really lovely family, by the way.) I told them about my initial reticence and how the disease talk had been hard for me as it was something that made me pursue all kinds of things I’ve come to deeply regret.

      I came to understand that for Ido, much of what he calls “disease” is the way he was treated by others misperceptions of him. It is so natural to internalize that awful message about oneself when it is all you hear for years on end. Yet another reason I continue to go on and on about how the conversation has to change!

      There are a few other people in the mid west who do RPM. Is it possible to get in to see one of them?

    • Oops, just realized “ACETC” is the place in Wisconsin that is training whole school districts in RPM, I believe, right?

      • That’s right. And it’s one reason that our kids have any chance of getting access to it: because having a center in our state doesn’t require us to go to Texas. Though it’s doesn’t have the “best practice” stamp of approval on it, during an IEP process. http://www.acetc.org/

      • I think they do. I’m hoping that they’ll get him in for a weekend session so I can learn how to help, and then we can get the schools to bring them out. Maybe the county or state could pool resources.
        I would love to reach out and find some friends for M to have. Would you ever consider going and presenting to a school district, by the way, or is that not up your alley, so to speak?

  28. Pingback: A Father’s Powerful & Extremely Personal Thoughts on Parenting | Emma's Hope Book

  29. Michelle Jones

    This is perfect.

  30. Hi my name is Kristin I’m 21 years old and I have high functioning autism. I hate the labels diagnoses use. I think it’s important for parents to except there child for who they are this doesn’t mean they can’t fight for them and provide opportunities for them it simply means letting your child know that they are not broken and therefore do not need to be fixed. This is also societies job. When people treat you a certain way your whole life you believe it and when you finally realize they were wrong your already feeling broken from it, I’ve read your story and I can say I’ve had similar experiences. I feel for you and I agree with you. I also want people to know that just because someone has (what society considers higher functioning ) autism doesn’t mean we ( people with HFA don’t struggle with everyday things that all people with autism do. People can’t judge who’s low functioning and high functioning we all are unique and think and communicate in our own ways.

    Best of luck to you
    If you have any questions about a adult girls experience with autism let me know!

    -Kristin

    • Oh also if you can see your child as who they really are no matter what struggles they have( which you already have showed) then you have already won half the battle believe me

  31. “It’s all well and good for parents of Autistic people to talk about how ‘low functioning’ their children are, how difficult their lives have become because their children aren’t as ‘easy’ as they anticipated, and how important it is for everyone to accept families who are dealing with ‘low functioning’ individuals, they are often the ones triggering meltdowns, directly or otherwise. Those Autistic people are in an ongoing battle against those who might very well kill them.” Just sayin’.
    P.S. Ariane, you might have noticed that I tend to copy and paraphrase the words of others a lot. That’s because I have language issues that, while not as profound as Emma’s seem to be, make so it’s easier to use others’ words in part to make my point rather than trying to find my own.

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