Susan Senator
All happy families are not alike...
All happy families are not alike...
The Parents Vs. The Autistics
It’s become pretty clear to me that there is another dichotomy in the autism community, and that I have to talk about it: the high-functioning autistics vs. the parents. This split is as lethal as the melting ground in a volcanic eruption. I am not talking about it to piss people off, though. I’m writing about this because I am sad about Nat and this question is like a moldy lump inside me that needs to get some light. I do not want to hurt people by saying this stuff out loud but I have to talk about this.
I have many friends in both worlds, needless to say. This is a passionate community where friendships are forged from the deepest of despairs: the idea that something is wrong with your child. For the parents, having a child with autism means lifelong worry.
That statement alone is enough to inflame many autistics, however. So many of the high-functioning and Asperger’s group feel that autism is not the problem. Autism is a different way of being, of perceiving. If the autistic person is given the right supports, therapies, and education, and a chance to succeed, then there is no problem. The problem, to the autistics (I’m generalizing for simplicty’s sake), is with society. Society does not fund autism interventions or therapies nearly the way it should. Society discriminates, by insisting there only be one standard, one way of showing intelligence — mostly through being verbal. Society (going by what the media reflects) insists that people focus on what the majority focuses on — love, friendship, career, health, attractiveness, popularity. But these may not be what autistics focus on. If an autistic’s very perception is different from a neurotypical (NT) person’s, then by definition the autistic will be excluded, discriminated against, thought of as inferior.
If you can’t do what the majority can do, you are different. Different is usually not liked. Again, I’m not saying I feel this way, I am trying to reason out what I think happens out there. Different is usually disliked. The deeper the difference, the deeper the int0lerance. The more resentment. And yet we as a country legislate compassion — and rightly so — with programs like Medicaid, Welfare; we legislate fairness with Affirmative Action, and the Americans With Disabilities Act. And so, because we legislate and fund help for the different, the different then have a chance to become less so. But what happens when they do?
Should autistics be trained to some degree to lose their appearance of autism in the name of having a “better” life — or would their lives be better without the attitude that different is bad? The divide is whether you believe that autism is an inherently good or bad thing. The divide is about who can speak for whom. Should a parent push their autistic child to be as NT as possible (suppress stims, learn to speak) in order to live a better life? (“Better” meaning more like the mainstream, or at least more independent of others’ help) How far is too far? We all agree that we should do no harm. But how do we define harm? Many parents feel that you should do everything you possibly can to mitigate the autism: education, speech therapy, SI, behavior mod, biomed interventions. And many high-functioning autistics feel that if you do this with the underlying assumption that autism is something to be rid of, you are abusing the child because you are giving him the message that he is inferior. Because autism, to many autistics, is a part of them, and not a bad part. To the parents, the autism, the autistic behavior, these are problems that should be fixed to whatever degree possible, because they are getting in the child’s way of a better life.
The divide is about not knowing where the truth lies, if there is even a universal truth.
My truth is pretty much only about Nat. My need — the purpose of this post — is to admit that I don’t know what he knows, and that is a huge source of pain for me. If I see him sitting around doing nothing except move from to chair to chair throughout the day, I feel bad. I look at him in his fullness and his clear, complicated eyes and I ask myself, “What kind of life is that?” Yet to give him a chain of activities, even to have him choose between a few, feels like I’m forcing an agenda on him. The choices don’t usually make him smile, but is that because he doesn’t know to smile, doesn’t smile socially, or because he truly is not happy about the choices?
Many high-functioning autistics and Aspies will tell me to presume competence. Assume that Nat understands pretty much everything around him, everything he hears, but he does not communicate that. He chooses not to, or he cannot. Either way, assume that he is at roughly a 22 year-old’s level of comprehension. Remember those who suddenly speak at 30 and say, “Don’t treat me like a child.”
But the parents experience their child differently from this. Or I should say, I do. Only sometimes can I see that Nat is understanding what is being said. Many other times that is not at all clear. Ned says I read meaning into what Nat does, that I project. Ned’s attitude is — to simplify it a bit unfairly — work with what we got, work with what we see, make the best of that. Don’t make shit up.
But I often feel that I am intuiting what Nat feels and connecting with him and enabling him to do more and grow. My attitude is more like: what if Nat does know close to everything that is going on around him; then shouldn’t I be treating him as if he has Asperger’s, and taking him to Aspergers Association of New England meetings, to Autistic Self Advocacy Network meetings? Talking to him all the time, the same way I talk to Max?
But what if he needs a slower, more simplistic way of talking? If I presume competence, I may end up talking over his head and excluding him!
I think that the more negatively you see autism, the less you can believe that there is someone there. In effect, you experience him as less, as different, as not fully able.
Or is it that the more you hate the autism, the more motivated you are to build the child’s strengths and make him more successful — and perhaps “less “autistic?
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There’s a lot to think about in this post. Every now and then my son surprises us with his intelligence and competence. Shaking his head yes and no is huge for him, and something he does appropriately only when he’s in the mood.
I share your feelings of pain at not knowing when to push, provide more stimulating activities, vs letting him do what he obviously enjoys and loves. So, I end up just trying to balance the two as best I can.
Once again, you make me think. Thank, Susan.
I have a lot of issues with the HFA. Probably b/c I am one of the “told’s yet undx’d”. I was told at my eldest son’s Dx that I was probably the one with Asperger’s. I have issues since I have one that has been “cured” although still has problems with social skills. At 2.5yrs he was dx’d with mild, non-verbal PDD. At 6yrs he was dx’d with Non-verbal learning disorder with a speach/language delay (or as the official paperwork says “a mild form of ASD” which got us services. At 12 this coming spring I expect they will either dx him with mild NLD or pull it entirely.
The child has not had a brain transplant. He is still as litteral as can be. His social skills are still a work in progress. He is still “different”. But he is not DISABLED. He get’s A’s in math, C’s in English (not bad since he learned it as a second language) and B’s in everything else. Only accommodations are social skills teaching, not academics… inotherwords he’s doing amazing in Gr 7.
But HE IS NOT DISABLED. Autism is a DISABILITY. It impairs your ability to function within the norms of society. It is not “OK” not to learn to mind your manners, your behaviour, and learn to fit into societies rules. Temple Grandin says this very thing in her speeches. I’ve heard her say it.
These people are not DISABLED. So to hijack a disability, claim it is a way of being, does more harm than good… http://www.thesudburystar.com/ArticleDisplay.aspx?e=3211701
So, no I don’t respect them nor their message and yes, when I’m dealing with “the powers that be” at all these meetings… I say so.
The brain is ‘plastic’… the bulls…t about everything is learned by Age 5… lies.
Susan,
This is really interesting. I thought a lot about this issue when I was researching Helen Keller’s life for HELEN KELLER IN LOVE: the ways she benefited from and deeply struggled with and also benefited from working hard to appear ‘normal’, i.e. close to the hearing and sighted world, despite her lack of sight or hearing.
No easy answers; your post reflects that.
Susan, well stated. My 16yo daughter is nonverbal, not high-functioning enough to be diagnosed Aspergers or HFA, but we find ways to communicate and she finds some ways to tell me what she wants. It’s mostly nouns and verbs. Abstract concepts such as emotions, feelings and pain/pleasure are much harder. I view the person she is as shaped by her disability as a unique individual to know and experience.
But I also acknowledge the reality that while we effort to create greater awareness, understanding and opportunity for her and those like her, the world is not going to change to accommodate her. I see nothing wrong in creating residential settings, employment and social-recreational outlets designed from the ground up around her unique qualities.
High-functioning autistic and Aspergers self-advocates who put themselves on an island by arguing that only the disabled can and should decide about the disabled to the exclusion of parents, family, caregivers and outsiders need to accept that they are only advocates for themselves, not the entire disabled population.
I make every conceivable effort to divine my daughter’s wishes, to listen to her desires. I believe it’s better to create CHOICES and let her decide. I believe I’m a better parent and friend to her if I try, even if she rejects every effort until she chooses the one she wants. I think we fail as parents the minute we stop trying.
Note: I removed some content from FW2’s comment because I did not like her tone, and I do not appreciate being told that what I’ve done is “crap.” As for the rest of the comment, fine, say what you need to, but leave out the attacks and the assumption that you know me and my child. If you cannot abide by this, do not comment, or consider this the last comment of yours I will post.
Susan, thank you for bringing this up. The image of autism is going to get lots of attention as more children with autism age into adulthood. Those who don’t see autism as a disability are talking about HF or Asperger’s. The DSMV slated for 2013 will officially expand the spectrum to include Asperger’s and my fear is that “Aspies” will become the face of autism. It’s much less disturbing to talk about autism and include who seems, outwardly at least, like the boy next door. It’s easier to believe that autism has always been around when we’re talking about someone with amazing abilities or high levels of intelligence combined with some quirky behaviors.
My friends with severely affected children have tremendous fears about the future. They clearly don’t need their children further marginalized by those who advocate just for awareness and acceptance.
Anne Dachel, Media editor: Age of Autism
FW2: So by your definition, a legless person is disabled, but give him an artificial leg and he is now a fully able person? I think that’s a bit simplistic.
I have high-functioning autism (Asperger’s syndrome) and yes, I consider it a disability. It impairs my ability to deal with changes, causing anxiety and depression when I experience major life changes. It makes me very uncomfortable around certain sounds and smells. It impairs my ability to read body language, leaving me guessing in cases where other people can just ‘read’ someone’s emotions.
And yes, I’ve learned to deal. I’m mostly able to function in polite society. I know what’s causing my anxiety, which helps to ensure me that I’m not ‘just going crazy’. I’ve found ways to optimise my guesses when communicating with others. I’ve found friends that don’t mind my differences and a job that suits me. But that does not mean that I’m now ‘cured’, that I’m no longer in any way disabled. It means I have an artificial leg.
I struggle with this too. And another layer that people are hesitant to discuss is the difficult experience of toilet training a kid that is almost as big as you. Cleaning up those messes day after day, year after year does something to you, ya know? And then you are told to celebrate autism and assume competence… and you really, really want to. But emotionally, it’s so hard.
Well said Susan, all of it. You put into words exactly how I feel. Just yesterday my 21 yr old, mostly non-verbal, non conversational son, turned to me in a quiet moment and said “happy new year”. It floored me! I went running through the house, frantic to find my husband, as if we had hit the lottery, to tell him what Dan said. Maybe he heard us saying it to others, or maybe he heard it several times on TV, maybe he was really wishing me a happy new year, or maybe he had no clue what he was saying. I have no idea, and therein lies the what-ifs. We simply DON’T know what thought, if any, went into that statement. For me, I try to strike a balance between treating him like an adult, in some situations, and still caring for his every need like I’ve been programmed to do.
At times I fall into the trap of letting people decide how I feel or more frankly, what I SHOULD feel towards my daughter. Some say she is ‘high functioning.’ Whatever. She is who she is. She requires intensive adaptations to do many simplistic tasks. She is angry some of the time. She is happy some of the time. I resent anyone trying to speak for her. If anyone will be her voice, it will the person, namely ME, who has cared for her for 15 years, scraped poop off walls, spent hours on the floor doing DIR, forcing communication, up at 3 am every friggin day. And damn them if they say I should not speak for her. I know her like I know I have a right and a left hand. She cannot speak for herself right now. And frankly, I don’t care if they don’t like, for whatever reason, that I AM speaking for her. They will come and go, I am the constant ship on the horizon for my daughter.
I presume competence with my gal, but I talk at a level I believe she understands. And I let her stim! Oh my! And I let her ask me question after question after question, without stopping her. I believe I am letting her be who she is. I believe I am respecting her autism as part of her. And, like you Susan, I don’t know what she knows. It pains me too, on so many levels. I stand on so many different levels of this whole ‘parents v. HFA’ debacle. And it is a debacle. I do know I stand for Maddie.
I do, though, respect the people, who for their child, feel they need to work to dismiss the autism somehow. That’s their choice. It doesn’t bother me, it’s just not my view or my life’s goal. My child came along too late for these reindeer games. She was born before the explosion of autism. I was alone, dealing with a girl who was autistic. There was no one for a very long time with any advice for me. Dismissing autism from my child is not a dream of mine. That ship sailed. I deal with the hand I am dealt. I try to make her life comfortable, happy and try to gauge if it is most of the time, a life I would like to have. I respect the people who accept their child and try to create a life for them, autism and all.
You definitely raise some interesting points here. I have one child dxed with Asperger’s and one dxed with moderate autism. I honestly don’t know what they think or how they view the world, because even if they could explain it to me, I still can’t see it from their eyes. When they were younger, I tried so many things to help them be as normal as possible, because I thought it would make their lives easier. But then I started wondering if it wasn’t more to make my life easier, so over the years I’ve learned to just let them be the best “them” they can be. I do know that having children at different places on the spectrum has made me realize that there is no one way to treat them or interact with them. They each have strengths and weaknesses and I have to address those differently. Zach, my aspie, comprehends things on a much higher level than Emma, my auttie. He has never struggled with speech or reading, both of them coming easily and quite early; but his social skills stink, and he struggles constantly to see anything from another person’s viewpoint. Emma, on the other hand, didn’t talk until she was 4 or read until she was 8 and still struggles daily with both. Her social skills are more advanced than Zach’s though, and she’s quite empathetic. Zach is good at science, Emma is good at art. They’re both great at math. They both struggle with transitions. They both have issues with CAPD.
If anyone, on the spectrum or not, told me to treat my children in a specific way or assume specifics about them, I would laugh. Because one thing I’ve learned over the years is that they call it a spectrum for a reason. No two NT people are the same, so why assume that two autistic people would be the same just because they share a diagnosis? In the end, I think all we can do as parents is try to know our own children as well as possible, celebrate their strengths and try to help their weaknesses, and treat them like the individuals they are.
thank you so much Susan. I struggle with this all the time. I had an epiphany the other day. I think I realized (slaps head ala I coulda had a V-8 ..doh) the reason Hallie still loves Sesame Street at the age of 15 is that she is able to “get” it…they actually teach her words. They were going over the “Word of the Day” …it was “Sibling”…she says to me, “Gabriel is my sibling”, “Gabriel and I are siblings”. She often asks me the meaning of words that I honestly find difficult to define in concrete terms. If I were to speak to her as if she were “high functioning” I honestly think it was be like Charlie Brown’s teacher going wwah wha wha…. I wonder sometimes if Asperger’s and Autism share many traits, but are in fact completely different in terms of global verbal abilities. Also as mothers, I think we instinctively just know how to communicate with our kids…often I feel as if I am her interpreter, helping her both speak and understand.
“if there is even a universal truth” *emphasis on if*
I also want to validate what every parent has commented (with perhaps the exception of farmwifetwo – not going there). My validation is worth only what you give it, since I am not a parent of a child on the spectrum.
Could it be that on the autistic-side-of-the-dichotomy, they are not able to see/perceive/understand/know well-enough outside of their own specific-ability-disability to accept the parental-dimension of autism?
Despite my best intentions, I may not be phrasing this correctly. Hoping this comment is not inflammatory. I believe that when the neurological causes of autistic behavior are fully understood – there will be *less* division on whether or not there is “a universal truth”.
There is so much to say on this topic, but i just want to note one issue at this time. Something that never gets mentioned about autistic self-advocates and the Autistic Self-Advocacy Network, ASAN, is how much of their time and effort is spent trying to improve the lives of those who are most affected by autism. Just in the last two weeks, ASAN became involved in the cases of children in two school districts who had been abused. One of ASAN’s petitions “went viral” and received coverage by AP major papers. Over 155,000 people have signed a petition to the Mercer County, Kentucky Board of Education demanding change after 9 year old Chris Baker was tied inside a bean bag and left in a hallway as “punishment.” ASAN did similar work for 14 year old Emily Holcombe, a young girl who, after being restrained by her “special ed” teacher for 55 minutes, struck the teacher with the back of her hand and was charged with felony assault by the district attorney and denied the ability to attend school.
ASAN and its self-advocates spend the vast majority of their time focusing on making the lives of all autistic people better through promoting better legislation aimed at, for instance, moving autistic people from institutions to group homes and changing laws and working to see that every autistic person is treated with dignity and respect. Its essential to understanding ASAN and self-advocates to know that *they* do not see themselves as different than other autistic person, and that when they fight for autistic rights it’s a fight for every autistic child and adult. There are lots of disagreements, which I will try to address later, but it’s important to note that these folks have the back of every person on the spectrum.
I know there’s a tremendous amount of disagreement out there to this, but I think the issue of low- and high-function is extremely important to parents of kids with developmental disabilities. It means everything when determining questions of autonomy and quality of independent life. Those questions ultimately fall into the hands of parents, both in behalf of their young children and in the tricky transition to adult life. We have to manage those differences even as we attempt to moderate how the rest of the world tries to apply those labels of functionality. Many advocates assert that these distinctions between high- and low-funtioning are unimportant, even insulting. But the parents who are guiding the development of their kids’ lives and futures know better.
My job as a parent, like every other parent, is to do everything I can to ensure that my child has the necessary and available resources to reach his fullest potential possible while experiencing the positives of life as much as possible. Like most parents, I also hope to minimize his experience of the negatives of life as much as possible.
My job is different from most parents as my child is “different” and his differences are easily noticed by most people. From the day he was conceived, his father & I consider our son to be our greatest gift. Raising him also is our greatest challenge. My son has autism, doesn’t communicate verbally with words in a way that his father & I, let alone the rest of world, understand and it appears to his father & I that our son doesn’t experience “the world” the same way we do or even in a way we can predict let alone understand. His father & I are the first to admit that we are raising our son while blindfolded in the dark without a safety net. Like all children, he wasn’t born with an instruction book nor have we found one despite plenty of searching. So, like most parents we do the best we can with the resources we have available. Until our son becomes a self supporting, self sufficient adult, he remains our responsibility & we will continue doing the best we can. While it is our greatest challenge, raising our son also is our greatest joy. However, like most parents, we wish our son’s life wasn’t as challenging especially for him. No parent wants their child to experience pain & we do what we can to help alleviate his pain.
I pray for the day my son can communicate in a way that I, his father & the rest of the world can understand. The day he tells us (using words or some other understandable method) & shows us that he is a self sufficient, self supporting adult is the day his father & I will stop being responsible for him & making decisions for him. On this day he is free to denounce our efforts on his behalf & make all of his own decisions as to how he wants to live his life. Until that day we’ll keep working on helping him to make as many of his own decisions as possible while keeping him as safe and secure as possible.
The day the adult autistics or anyone else is willing to be fully responsible for my son’s support and well being is the day we’ll consider following their opinion as to how to best parent our son.
Until our son becomes his own or someone else’s responsibility, his father & I will continue trying our best to raise him while blindfolded in the dark without a safety net. Like most parents we want a life for our son where he has maximum dignity, happiness, purpose & independence along with support & security since we won’t always be here. Like most parents we’re doing our best to make that happen regardless of whether the adult autistics or anyone else agrees with us.
This recent Christmas message from my friend Fr. Mike Bassano, a missionary in Tanzania, describes how we hope our son always is viewed in his world; as someone who is a valued member of the community, accepted for who he is & able to contribute what he can while above all, living a life full of happiness. http://www.thecatholicsun.com/sun-december-22-2011/father-mike-bassano-shares-his-christmas-story
Susan,
I am not trying to change my 15 yr old daughter because I don’t appreciate her differences, but because I want her to be able to grow up to live an independent life – where she can earn an income, live independently in her own home or with a companion, manage her own support network, make safe choices, and pursue happiness.
I think the dividing line in the autism community is ultimately if a person can achieve those goals of independence. At some point when a child is in “transition” the parents (finally) have to acknowledge that their child will or will not meet the criteria for adult social service support (medicaid, SSI, and services). At that point, the life paths will differ between those that are “high functioning” and those that need government supports.
I don’t think the divide in the community has that much to do with a mission of eliminating “differences” but rather with the need for enabling independence.
Yes, I am upset that my daughter would rather play Pixie Hollow on her computer for hours rather than visit with a friend or interact on Facebook. And I do think this behavior will impede her from being able to lead an independent life. That is why I try to intervene – even though she does not like it.
My 16 year old, High Functioning, is NOT academically or in any other way developmentally on target……But they say high functioning because she can cope with minor social settings and is verbal enough to handle life…..motly.
She can carry on a conversation, but can’t ask for help or report pain appropriately. The phone is very scary to her…..
She has tantrums when things don’t go exactly the way she thinks they should…like a 2 year old.
So, the argument from HFA’s that the problem is the expectations of society, that people learn to mesh into societal norms of manners, eye contact, and reciprocal language (body and verbal) seems just that……A tantrum over not having it their way……My daughter will often pitch hours long fits because she had to pick up someone else’s dishes or clothes and no amount of explaining that others have done that for her will help. Other days she is totally able to comply with chores without any problems…..
I am not willing to negotiate with her on a day that she is unwilling to comply with simple house rules. No chores = No priveleges……. I sort of feel like the expectations of society (manners etc.) should be met, when possible…..Sometimes that is not possible and other efforts should be made (sign language, picture card communication, and accomodations when/where possible in public places such as handicapped seating etc.)
I cannot separate my daughter from her disability so I am unable to say I wish she didn’t have it. I cannot separate the person from the autism, because autism is part of her like blue eyes, blonde hair, and freckles. I don’t know if I would want her to be “cured” because I am unable to say i would even recognize a Jessi who was not autistic.
No matter how much or little he understands, there is “someone in there,” your son. If he grasps the concept, I doubt he appreciates having his personhood questioned.
The validity of the idea that “more successful” and “less autistic” are equivalent depends on your definition of success. Just look at how many of the HFA/Asperger’s people you disregard were damaged by being forced to look less autistic. I would have done many things better without bloodcurdling nightmares and stress that, in childhood, manifested as excruciating psychosomatic pain. I can pass. I will work, may marry and have children of my own. I will be viewed as a productive member of society. Whether I can get over years of trying to twist myself against the grain of my nature, maintain healthy self esteem, and experience lasting happiness is undetermined. I have met people my own age who are less able to pass. They will have a harder time working, but the Internet may let them have careers despite weak social skills. If they take non-professional jobs and need some outside support, there is no shame in it. No one in the developed world is truly independent. How many of us can grow our own food? They like themselves. That may be the competency I never gain.
When we tell you not to force your children to look normal, those of us who are reasonable are not trying to call you evildoers and bad parents. We are saying that what was done to us was not worth the cost because we care about your children, too.
This is an excellent post Susan. I have come across this same division on a number of occasions from both sides. When I write from my heart about my struggles and frustrations of mothering two sons with severe autism I inevitably anger those with HFA and yet when I write in support of those with HFA and their anger at certain organizations that use fear mongering tactics to scare parents into thinking all diagnoses of autism is a tragedy I incur the wrath of those parents who believe autism is something to be cured by any means necessary.
I have never, ever questioned Nat’s personhood. I’d venture to say that neither have any of the autism parents I know, on the Internet and face-to-face. And no one has said there is shame in non-professional jobs (hello, have you seen how I love Papa Gino’s because of how they loved Nat’s work??) I am saying that parents and HFA/Asperger’s folks have very different perspectives most of the time. Both sides have valid points and need to learn from one another. The HFA folks can teach parents more about living with difference, and perhaps even about autistic perception. The parents can teach the HFA folks that having an autistic child, either Low or High Functioning, gives parents the right to protect and edify their children. We parents have the right to make our children as skilled as they can possibly be, but we must balance it with acceptance of who our children are and let go of false expectations. If we are fortunate to know what those are!!
Thanks, Sunday. Neither group has the market cornered on Truth. All we can do is find connecting points and learn from one another. And as I like to say, we should try not to be part of the problem.
I lack the energy to respond fully to this discussion. Just a few points:
-Why does this post treat “autistics” and “parents of autistics” as though they are separate categories?
http://thinkingautismguide.blogspot.com/2011/09/self-advocateparent-dialogues-day-six.html
-The idea that autistics asking for acceptance = tantrum over not getting one’s way is one of the most asinine things I have ever seen in discussions of autism, and that’s saying a lot. This is speaking as someone who was frequently perceived as doing this by people around me (who oftentimes didn’t fully understand what was going on, parents included).
-I don’t want to speak for all autistics, but the idea of someone else “speaking for” their autistic child creeps me out. Advocate for your child, by all means, but when people say they are “speaking for them,” that’s a big problem.
I do not understand the purpose of anyone looking at the depths of life through These Vs. Those perspectives. My apologies if this comes across as derailing, but this is how my life is: I am an autistic mother of autistic daughters, and although I am a feminist, feminism has its basis in only certain types of women and has left us far behind.
No one is going to magically change society within a few years. That doesn’t mean seeds cannot be planted. I had to run away from home in my twenties (“throw myself away when no one was looking”) to create a life where I made decisions, because my own mother found me too stupid, too incompetent, and an embarrassment. Neurodiversity is about respecting people and giving chances, in my view. I love my children more than anything and I don’t want them to be hurt as I was. The rates of PTSD in autistic adults are extraordinary, regardless of how functioning they present.
Heck, things like worrying that no man would love me if he got to know me because I was raised to think I was by default a mistake hurt and lead to downright dangerous results. I’m far from the only woman this has happened to. Autistic women are more likely to be in abusive relationships that no relationships. It’s things like this that neurodiverse advocates try to bring attention to.
Far be I from only speaking for myself. I speak because I want to protect my daughters, my nephew, former students, kids and adults I’ve never known, but I also want them to have the self-respect needed for wanting to protect themselves.
My parents sat on my hands and wouldn’t let me do anything that caused stimming. It didn’t stop me from stimming. I still flap every day, privately, and I envy those who allow themselves to flap freely. I know people have to make “normal” impressions; I simply tell children that we’re not in a place to flap (or screech or what have you), repeatedly until they do understand it as simply one of society’s unwritten rules and not an inherit fault with themselves.
Autism itself is neutral, in my opinion. It is a disability, but I also view having ADHD and dyslexia as neutral. There are good and bad qualities, and qualities that can’t be pinpointed one way or another. Society is neutral. It has good intentions, bad intentions, and confused intentions. A better world is possible, but one of the first steps is for the world to stop it with the These Vs. Those prejudices.
Susan, thank you for your thoughtful, thought-provoking posts. I am a mom to a lovely and delightful young woman with PDD and several other diagnoses. She is sweet and funny and kind and she also needs a lot of support and guidance and care to be safe. Parenting her has changed me forever for the best and like you, I search every day to keep her safe, engaged and happy. This is such a life-changing course for a parent. I am fortunate to have dear friends and family who take an interest in her and while they do not bear the burden on my soul, they lighten it by taking an interest in her and in the struggle we face, now that she is an adult in the realm of adult services. You are doing a great service to people like my daughter and your son by writing about it. In your blog you tell the real story – in your new book you expose a lot of the real story by showing how it changes a family and a marriage and the way a parent copes and hopefully thrives in this very challenging situation. Writing helps you, but by writing, you help so many of us that do not have that gift. For your advocacy, articulation, and genuine good intentions, I truly am grateful to you for putting out there for all the world t see the good and hard life of a mom with a child with this diagnosis, best wishes for a very successful transition to post-22 this year,
Just pointing out that there are autistics who are: 1. not HF, 2. embrace parents, 3. believe that autism is both a “difference” and worth treating. I am all of the above!
Hi Susan
I think many, many people misunderstand and misrepresent the social model of disability. I have seen a string of posts in the last month that paint a picture of “what autistic advocates believe” about the social model, and I keep asking where people are getting this information. Because in my experience, this is a huge oversimplification or outright misinterpretation of what most people actually believe.
You say
“So many of the high-functioning and Asperger’s group feel that autism is not the problem. Autism is a different way of being, of perceiving. If the autistic person is given the right supports, therapies, and education, and a chance to succeed, then there is no problem. The problem, to the autistics (I’m generalizing for simplicty’s sake), is with society.”
This is a misunderstanding of the social model of disability. I don’t know anybody who argues that autism does not involve objective impairment.
I’m going to quote from a post by Julia Bascomb here, because she said it much better than I could:
“The social model looks at the interaction between differences/impairments/diseases (which are all different things, etc.) and environment. The social model calls this interaction “disability,” and stresses that it does not, cannot, take place in a vacuum. The social model emphasizes that this interaction, disability, is by necessity social constructed, like gender or race. That does not mean disability is not real. And it definitely does not mean that impairment cannot be a real or objective thing. The social model of disability isn’t about the non-existence or neutrality of impairment; it’s about how we as a society interact with impairments and the people who experience them, and how that interaction creates additional, very real barriers in all sorts of ways.”
The whole post is really worth a read:
http://theskinofourteeth.tumblr.com/post/15045815952/mosaicofminds-in-order-for-the-model-to-work
I think misunderstanding of the social model and misunderstanding of ASAN (and most autistic advocates)’s position on therapies, remediation, and impairment creates unnecessary rifts between parents and autistic adults. Nobody is arguing that autism is not a disability, or that speech therapy for people who don’t naturally develop expressive language is child abuse. If people did argue this, it would be extreme, absurd, and worth getting upset about. But it just isn’t happening, at least in any large scale or formal way.
Hi Susan,
We have met in person at one of your book parties, and you subsequently spoke at my son’s last school.I read your poignant, thoughtful and very unbiased post here. And all of the subsequent comments So much food for thought. But what resonates most, as the mom of an 18-year -old child with autism (whom I’ve written extensively about for TIME and most recently, the NY Times), is the comment you made: “The divide is about who can speak for whom,” I think that sums up this argument. My son can’t speak for himself. And when he climbs over people on the cross-town bus to get to his favorite seat, it is me and my younger son speaking for him saying, “Sorry, he didn’t mean to step over you, he’s autistic.” So until the day he can speak for himself and explain his behavior, I will, as his mom, speak for him. With love.
I generally refute a neat divide between “parents” and “self-advocates”. I notice that the “self-advocate/parent divide” tends to show up when people (mostly non-disabled parents) want “self-advocates” (disability rights activists who have disabilities) to shut up about whatever it is that is getting in the (non-disabled) parents’ way. Because Autistic disability rights activists spend a LOT of time and effort working for simliar and often the SAME goals as non-disabled parents (and disabled, including Autistic parents, like myself), I can’t really buy the whole “divide” idea, nor can I buy the idea that “high-functioning” Autistics have no clue about what “real autism” is like. We can probably FEEL something closer to whatever it is you think we don’t understand about autism, than you as a non-disabled parent can, although you do OF COURSE know your own child better than we do.
Links to efforts I have made (and not enough, I admit, since my time and energy are limited, and I wish I could do more):related to that advocacy for your children, more than for me or my child:
paulacdurbinwestbyautisticblog.blogspot.com/2010/01/virginia-budget-hearings-at-general.html
paulacdurbinwestbyautisticblog.blogspot.com/2010/03/charlottesville-daily-progress-budget.html.
More links to things I have done regarding AAC, deinstitutionalization, can be found on my blog.
Hey, Amy! How are you guys? Thanks for stopping by, and happy new year!! xo
I want to make sure that we are not bashing anyone in this comment thread. We need to learn from each other, that is my message. I don’t want people generalizing about autistic self advocates, and I don’t want people generalizing about how parents don’t get it. If I’ve done that, I apologize. I believe I did say, however, that you should excuse my oversimplifications.
As a board member of the Autistic Self Advocacy Network, I would like to clarify that ASAN membership and chapter meetings have never been restricted to those with Asperger’s or HFA labels. On the contrary, our chapter leaders are specifically told that they must not discriminate against anyone on the basis of diagnostic or functioning-level classifications. Some of our members communicate by means of AAC devices. Nat would be very welcome to attend an ASAN meeting; neither he nor anyone else would ever be excluded because of speech and communication difficulties. If Nat needs help from you or another support person to participate in the meeting, you would be welcome to attend as well.
It should also be noted that the social model of disability, which originated in the 1970s, is widely accepted by academics and disability rights advocates. This perspective is in no way unique to the Autistic community or to self-advocates who have developmental disabilities.
Kind regards and best New Year’s wishes,
Meg Evans
Thank you, Meg. I LOVE ASAN. They did invite me to a meeting, and Nat to another!
I believe the main issues that must bring parents and Autistics together is the civil rights struggle that is taking place in the world of autism as we speak. The DSM is being rewritten and Asperger’s will disappear. That’s done. The question is where we go from here. Many people have the idea that “losing Asperger’s” will in some way benefit autistics at the less affected end of the spectrum. Not so. These people are in danger of losing ALL services if their disability is reclassified as a “communications disorder.”
If we further divide autism by an arbitrary standard, we will create smaller groups who will fight against one another for the very small pie that is divvied out to all autistic people. It not hard to see why the parents vs. autistics split developed. What’s important is to work as best we can for the benefit of all autistic people.
How do we divide ourselves and how can we do better? A huge issue that comes up immediately in all these discussions is how “high functioning” autistics are so different than “low functioning” autistics. Of course they are…and of course they are not. Every autistic person is different, and all autistic people are disabled. When we divide into segments we lose the strength that being a cohesive group offers. Does it matter that insurance in many states now must cover autism (to some extent) because self-advocates worked on this issue or because parents did? I think not.
Hi Susan,
I’m in a somewhat interesting position as both an autistic person and the parent of a moderate-to-severely autistic child. People like me often get lost in divide, so to speak, but I think we can be a crucial bridge.
On the whole, I tend to agree with the points that Sarah, Rob Goss, Paula C. Durbin-Westby, and Meg Evans have already made. I think a lot of the division boils down to not fully understanding the position of the other party. We need to listen to each other – I mean, really listen to each other, without bringing in all the emotional baggage. A lot easier said than done, I know.
What to do? The best we can with the tools we have at the time. 🙂
My daughter is only 6 and is very high functioning, but I am constantly worrying about her future. I struggle so much with what my expectations should be of her in school and should I be pushing for something more than she is receiving (she is currently mainstreamed with only speech therapy and all other therapies we have done have been done outside the school district through health insurance).
Interestingly, I had my first physic reading a few weeks ago. When nothing was mentioned about my children in the entire reading, at the end I asked about her…what could I expect for her future? and should my expectations be that of a “normal” child. The physic, who is one that that reads tarrot and angel cards, as well as is guided by his spiritual guide listened for a second and told me point blank…I’m not getting that she is anything other than “normal”. He asked me to select an angel card and it was the archangel Michael (of miracles and protection). He smiled and nodded and told me I has nothing to fear, that she is constantly watched over and protected. And as goofy as all that stuff can be interpreted. It really did give me some peace and a deeper realization that what ever I project…she is an extremely happy girl and what more could I hope for?
I am Autistic. I very strongly dislike functioning labels. Many non-disabled people take this to mean that I am unaware of the vast differences in abilities among autistic people. It does not. The differences among us are vast – there is no denying it. But I believe that “high” and “low” functioning terms create a binary system where a person is put in either one box or another, often arbitrarily. Sometimes it is based on IQ, sometimes on ability to talk, sometimes on how well a person passes for normal, or on some unspecified ability in some unspecified number of life skills. There is no standard for who goes into which category.
What’s more, is what these labels do. Language affects how we treat people. If you are labeled low-functioning, people ignore your skills and abilities and presume incompetence in just about all areas. The more “low-functioning” you are considered, the less of a person society sees you as, and the less of a person you are treated as.
If you are labeled high-functioning, people ignore your disability and support needs (often life-threatening ones), and presume competence in just about all areas. The more “high-functioning” you are considered, the more society sees you as a whiny, self-centered quirky individual who isn’t “really” disabled at all, no matter how significant support needs and disability actually are.
Because terms like HFA and LFA can mean so many different things, I think it makes much more sense to just say “Autistic” and then describe the specific traits you’re talking about. For example, instead of saying, “That self-advocate is HFA”, you could say “That self-advocate writes blogs and speak at conferences.”
Instead of saying someone is LFA, describe what you are trying to communicate. For example, “My son has significant difficulty communicating and self-injurious behaviors” actually communicates a lot better than just, “my son is low-functioning.”
Of course neither of my above examples tell you much about the person as an individual, their likes and dislikes, personality, etc. But if you want to very simply talk about a person’s skills or challenges, specifically say what you mean instead of resorting to the lazy use of imprecise and stigmatizing functioning label.
Again, I’m not saying that there are not big differences in Autistic people’s abilities, presentations, and challenges. But as Autistic people, hell, just as PEOPLE, there are certain things we all have in common. We all want the same rights as everyone else – the right to proper healthcare, education, a meaningful job, to be free of abuse, a place in the community, acceptance, self-determination, and the right to choose where to live and with who.
A preteen Autistic named Drew Goldsmith made this amazing short documentary about functioning labels called “Grading People”. It’s about 9 minutes long and quite poignant.
The 1st thing we need to all realize is that Autism is neither bad nor good—it just is. Life isn’t fair, and some of us are born deaf, blind, crippled, or with Autism. It just happens that way.
The “dichotomy in the autism community” between “the high-functioning autistics vs. the parents” is very real. I happen to be an adult Aspie, and what bothers me are parents, and more specifically, parents groups (“That group that cannot be named”) that purport to speak for ALL Autistics. Well, I can speak for myself. And I can tell my own story. So please don’t say you speak for me, know what I’m thinking, or know what’s best for me. In kind, I will not speak for you or for your child who cannot speak. But I will advocate for them that they get the help they need to live a better life. I will also advocate for them that they be treated with dignity, treated as Human Beings, and not looked upon as 2nd class citizens.
Also, please don’t call Autism a “disease,” or an “epidemic.” That certainly doesn’t make the NTs feel any better about us. Even talking about a “cure” makes it sound like a disease.
•You can’t “catch” Autism!
•If you spend time with Autistics, you won’t become Autistic yourself!
So please, when you speak for your child/grandchild/brother/sister, make it clear that you only speak for them, and not all Autistics out there. Thanks.
My appologies Susan… by no means is the work you’ve done “crap”. You got the short version of a HUGE soapbox of mine… here’s a longer one. I get terribly frustrated at the ABA therapists attitude that communication wasn’t required. It was one of the huge difficulties I had with them in my house. It was more important that he do baby games following a strip. Sort until he couldn’t sort anymore YET, never explain to him what he was sorting. Then he had to draw unending straight lines until he had them mastered before moving on to a slanted one.
It was “crap” IMO. It’s nothing more than “training”. In our world they cut you off from every other therapist. Speech, OT all not necessary. They attempted to hijack my IEP process… that’s a long story unto itself… and finally the Teacher had to remove them from the classroom… 6 weeks into SrK. They hadn’t been in my house since July so I happily waved them on their way. 5yrs later my MIL was in for chemo treatments and I walked into the other side of the hospital where they were… I shook made it into the reception area and left… I still do thinking about it.
It’s not teaching and it frustrates me above and beyond that the system truly believes these children cannot be taught. That they actually have the balls to tell parents that. How horrible is that?? My eldest was not suppose to be able to learn. The first Dev Ped told us that to our faces when he was 2.5yrs old… WT??? Russ will NEVER live on his own. BUT, Russ can learn. Russ can talk in his own way. Russ does amazing animated graphics – with sound – on his DSi. Russ plays age appropriate DSi games, uses the computer better than I (don’t watch him figure it out you can’t follow it… but he uses it better than I and has never been formally taught) watches age appropriate cartoons, does not understand sitcoms. Russ likes books like Geronimo Stilton – straight forward plots – he doesn’t understand the “jokes” of Capt Underpants. Russ can type his thoughts into a computer. It’s getting clearer by the day… it started disjointed like you posted Nat’s comment from yesterday… BUT, they can do it. They need AAC programs… they need AAC programs with programs which I discovered mine didn’t have… just equipment. WT??? So, in the end I still have to teach him to talk, to write, to…. and then they wonder why he’s going to be homeschooled at Gr 7. I have an amazing TEACHER at the moment, so he’ll stay another year in school.
First thing I demanded when he left the regular classroom was that he was to be taught and not have the aide do it for him. Daily typing of “today is…. we are doing” is ignorant at best. Or writing under a picture “he is doing” this was considered learning and communication. They did not believe he could type anything else. It took her months to get him to realize he could. The patience, the assumption he could do it…. is so very rare out there… I’m sending him to piano lessons when school starts. Instead of getting that “deer in the headlights” look when I asked them I got “definately, when do you want to start”. Rare… so very rare that people truly believe they can learn. It should be automatic.
They are not the sum of their IQ scores. We should always presume competance, always believe they understand…. if not…. should we every become ill, have a stroke…. will they write us off since we may not be able to communicate without aid???
So yes… ABA is CRAP. Training is CRAP. Believing that a non-verbal child is not competant is crap. Assumption of MR/ID due to a dx is CRAP. Assumption that they can’t be taught to learn to adapt, control their own reactions (and if anxiety/hyperness is more than they can handle then with meds). And I work hard every single day proving it is. Proving that these children/adults may require life long services…. but D@mnit… they can learn and they DESERVE the right to do so and be treated with respect and as children/adults not like something that needs to be trained.
@FW2: Thank you for clarifying!! I have to say that I did not really buy into ABA all that much. I think that the reason Nat did so well at his ABA school is more about the wonderful teachers there who believed in him, and the one-on-one attention. Once he makes connections, it only gets better for him — and us.
Not to raise a sore subject or make a pointless point — since it is essentially an abstraction with no real world, day to day implications at this point — but your thoughtful (and brave!) post cause me to once again consider that there is no “autism.” There is most likely a large number of conditions, some variations within a single disorder but others unrelated on a medical level. Autism is probably a group of disorders of varying nature, intensity, and debilitation. We have no way of talking coherently about them because we have no coherent knowledge of what they are and how they are related, if at all. It reminds me of another brain condition: mood disorders, which vary from mild chronic blahness to psychotic manic depression. Nobody knows if they are even related to one another on a biological level. But that doesn’t stop us from treating the severe ones (and pushing treatment on them even if they don’t want it and see their condition as totally valid and even as conferring special insight and abilities on them) — so that THEY can achieve the clarity to make a choice about their condition and whether to modify it with existing measures. And we also offer whatever treatment there is to the people with milder conditions if they want it — for the same reasons. But not as urgently. As somebody on the more severe end of this continuum myself, I can attest that being presumed incompetent and unable to decide for myself is infuriating and seems grossly unfair and bigoted — and I can also vouch for the fact that accepting treatment has made my life immeasurably more liveable and productive. But I remain “different” and “disabled” in some sense and to some extent. This must be infinitely more complicated and intense for someone with autism because there is so little common ground between their differences and the average person’s experience of their own minds (whereas everyone can relate to mania and depression as exaggerations of their own mood states). I think we need to accept what’s there, at face value, hope for what could be there, try everything that might increase clarity without compromising dignity, and work toward maximizing people’s choices for meaningful lives. Easy to say, not easy to do.
I just wanted to quickly comment about the “presume competency” question you mentioned. As a parent, I often assumed that my autistic daughter *didn’t* understand a lot of what was happening around her when she was young and couldn’t communicate very well because she was very disengaged from everything. As she’s grown older, more engaged, and more communicative, she’s told me about memories she has of things that happened when she was really, really little — times when I was sick and she was afraid I was going to die, etc. It’s absolutely mind-blowing to me because I honestly had no idea she was paying attention or understood even half of what she apparently absorbed during all of that. I wouldn’t worry about “talking over his head,” because the communication and bonding you’re creating with your son is much, much more important and deep than if he understands your words. The words aren’t nearly as important as the act of including him as much as possible in your conversations. He may not understand the words, but he definitely understands the love of those demonstrations.
ABA is not crap. When implemented properly by a board certified behavior analyst, it is very effective and greatly helps both the child and the parents. However, like all professions there are good ABA therapists and bad ones. Unfortunately you have had bad experiences and for that I am sorry you had to go through that.
Ah yeah, I’ve experienced what Devon mentioned from a firsthand perspective and later in from a third party perspective, and I wholly agree with her point.
* later in life
In the beginning, I used to let my son’s behaviors get to me, and I am a negative person by nature. But 10 years and 1 more son with autism later – I have learned to find the joy, even on the more difficult days. Autism for us has been a blessing – it has inspired positivity, a sense of teamwork, understanding, patience, cheering for and advocating for my kids. It has let us slow down the hectic pace of life and simplify things, taking it bit by bit when we have to. I do believe that it’s all in perspective, and anything negative said about autism in front of one with it, will make them think negatively about themselves. We fight negativity enough, the last thing I ever want to do is make their specialty out to be something bad. God knew them before I ever did and this is what he meant for them, and for us too. Who am I to question that or make my kids spend their childhood feeling like the root of all problems while being dragged from treatment to doctor to therapist and back again? I’ll take the positive outlook every day!! They make my life so much better, just the way they are!! 😀
This has helped me for the last 10 years, perhaps it will help another 🙂
***Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.***
I read this whole thread with a mix of dread, fascination, nods and shaking head. I absolutely feel there is a divide. And I think there will continue to be for many reasons. I also feel, as several parents stated, I have and will continue to speak for my son. I don’t feel remotely uncomfortable or dishonest by doing so, but I allow for the fact I am only assuming as best I can. Most of what I mean when I say I am speaking for my almost entirely nonverbal young adult son is that I am translating, explaining and asking/confirming what I believe to be his needs and wants. When he’s able to disagree or let me know more effectively, I definitely hear and relate that information.
And as far as ABA goes, it can be dangerous and it can be marvelous. It depends on too many factors to just make a blanket statement. That said I chose a non-ABA program during the teen years.I felt that there were quality of life issues and other means of instruction he would benefit from more when I compared the current options for ABA programs in my area.
I will do my best to try to challenge and protect my very vulnerable son for as long as I can move. It’s my job.
Jennie
I am conflicted here. My basic instinct is always to pull our children out of the maize. It has been successful in our circumstance. However an effort of trial and error is the name of the game. As a pioneer, with a 24 year old son who has autism, we are observed with a certain scrutiny. As a writer, I have always been willing to share. Nevertheless, the snowflake rule applies…’if you have seen one person with autism, you have seen one person with autism’. It has occurred to me that people speak to our children in a loud and slow manner. It offends me, the same way it did when my mother was in a home for the elderly. She was a human being! Talking louder and slower does not cure; it simply dehumanize
I think the use of the word “Society” is not quite correct for this article. My 6-year-old son is high functioning autistic. Since he was 18 months old we had him in the therapies he needs, which used to be speech, OT, and physical therapy. Now he doesn’t need most of that anymore, just some physical therapy. Parents have an innate instinct for the survival and well being of their children. To survive you have to have money. To get enough money to survive all the way through retirement, you have to have more money than just your every day needs. To get more money than just your every day needs, you have to have a job. In order to keep a job, you have to have social skills and you have to be able to communicate. Another example, in order to reproduce, you have to find a partner. In order to find a partner to stay with for life, you have to have social and communication skills. This is an innate instinct by parents to want to continue the family line. “Society” might prefer people to have social and communication skills, but survival practically requires it. So it’s not about “Society” per se.
I love spending time with my son, we have a lot of fun together. We have a special bond. I know that anyone who would take the time and effort to get to know him and understand the way he communicates would get a wonderful relationship out of it. Any company that would hire him when he grows up and do the same effort would reap rewards, because he is very intelligent. But companies don’t do that. Companies interview (verbal!). Companies ask very tough ambiguous questions in interviews that are difficult even for the best communicators. Companies will not be changing how they select employees for a long time, if ever.
So yes, we are going to teach him communication and social skills any way we can. It’s not that he can’t learn these things, he just learns them differently, and we have to find that learning path. We are not trying to erase his autism. We are trying to prepare him for when he grows up and goes into the outside world the best we can.
I feel that the word “mitigate” in this statement from the article is incorrect:
“Many parents feel that you should do everything you possibly can to mitigate the autism: education, speech therapy, SI, behavior mod, biomed interventions.”
We are NOT mitigating anything. We are ADDING skills. Just the exact same way if you want to get a better job, you go back to school to add to your skills. It is no different.
Exactly! Vey well said Kelly!