April is Autism Acceptance Month, a month when many try to improve supports, services, and acceptance of autistic individuals. This year, 2012, is the fourth anniversary of the U.N. designating World Autism Day, April 2nd. Four years, one day, and a month dedicated to embracing autism.
And yet, some autism parents are still defending their right to say "I hate autism."
Why? Those who have used the phrase say it's an honest assessment of the difficulties of raising an autistic child. They cite the disruption to their family, the meltdowns, the sleeplessness, the worry. And they say it shows support for other parents who feel ashamed to admit their feelings and who feel isolated because of them.
But wait. There are many ways to communicate stress, support, and community without using "hate" and "autism." No matter how much stress a parent feels, we can vent and support each other without putting down a biological part of our kids and of many adults. We can recognize the emotions and challenges without encouraging hatred or hateful talk.
So why "I hate autism?"
Why would a parent put her own child at risk for abuse and neglect by making it okay to say "I hate autism"? Parents have immediate impact on how autism is perceived and how their child is perceived. Parents are the biggest influence on their child's life. They can protect or put their child at risk for emotional distress and violent behavior. By one doing one simple thing. The most important and predictive factor for negative outcomes in a child's life is one thing: a parent who fully and unconditionally understands and accepts him. (The National Longitudinal Study of Adolescent Health, Journal of American Medical Association, Sept. 10, 1997.)
A parent cannot fully and unconditionally accept his child, but not "the autism." That's not unconditional. That's not acceptance.
Why? Children quickly and easily feel their parent's negative emotions and they internalize it, believing that they are at fault for their parent's stress. While you think you can separate out "the autism" from your child, hating the negative symptoms while loving the child, your child doesn't make such fine distinctions. He will recognize the feeling, maybe only subconsciously, and he will translate it to "I am acceptable only if I hide part of me. That part of me is shameful. There is something wrong with me."
Suppose a parent thought, "I hate the female side of my child: the hormones, the migraines, the mood swings, the possibility of promiscuity and pregnancy. Parenting a girl is so much harder than parenting a non-girl." The child doesn't think "You hate me being female." She feels "You hate me."
It's the same thing. "I hate the autism side of my child: the meltdowns, the sleeplessness, the fear of not knowing. Parenting an autistic child is so much harder than parenting a non-autistic." The child doesn't feel "You hate the autism." He feels "You hate me."
"You hate part of me" equals "You hate me." "You hate the situation that my brain wiring is causing" equals "You hate me."
Even if you reword the phrase, the feelings - anger, hate, and fear - are still there. The anger leads to shame and aversion. It prevents you from making a rich, complete connection to your child. You'll focus on the negatives. You'll feel disconnected and angrier.
I don't want you to change your language. I want you to change your language and your heart.
And not just for your child. "I hate autism" dehumanizes an entire category of people, including adults, including my child, including my friends' children, by reducing them to "autism, a hateful condition." You can't hate only part of a person. That's why we have laws prohibiting discrimination based on race, gender, national origin, sexual orientation, disability, medical condition, and religion. We have these laws because you don't want people saying "I hate autism" to your child. You don't want them saying "I hate autism and, therefore, I can't hire, befriend, be near, or like you."
Why is it okay for you to say it? Because you're the one doing the parenting and it's difficult? Does that mean you hate parenting? 'Cause it's difficult. You hate babies? Marriage? Special needs children?
April is Autism Acceptance month. Not just awareness, but full-on acceptance, embracing the ups and the downs. Not "I accept parts of autism, the ones that are easy." Not "I accept parts of my child." But "I embrace my child, every single part of him, easy and difficult." And "I acknowledge that hating an inherent, biological part of my child is unacceptable."
I want to challenge how you think about autism. Because I care about you, your child, our community. I care about the world my child will live in. I want that world to greet him kindly. I want that world to be filled with people who lovingly embrace all autistic individuals for who they are.
So that my child will never know a person who hates only a part of him.
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Brenda, this is spot-on. Thank you for posting this. I will be passing your message on.
ReplyDeleteHmm, not sure if I entirely agree with this. If my son had some illness or disease that made him miserable, I would hate it. So why not autism?
ReplyDeleteI don't hate any part of my son... I hate that he has to suffer with the effects of being on the autism spectrum.
I don't hate the person with autism, I just wish they wouldn't have to go through what they do every single day of their lives.
Speaking personally, what makes me miserable is not being autistic. It is living in a world that speaks of tolerance and acceptance, but rarely practices it. It is struggling to understand others, fit in, make friends, and never seeing others do the same in return. It is putting out tons of effort to build relationships, and having nearly every single one fall flat on its face.
DeleteI do not suffer the effects of being on the spectrum. I suffer the effects of living in a society where merely being different can be crippling.
(I don't want to minimize any of the struggles that others have to deal with, especially wrt self-injurious behaviours. But many of the struggles that autistics face are not intrinsic to the condition, and in fact cannot be wholly addressed by only working with the autistic person.)
Fully agree with you here.
DeleteA friend's child died because of cancer. I HATE cancer.
Hating autism doesn't make me hate my son, nor does it make others hate my son. For that matter, unfortunately, my son is SO low functioning, if someone did hate him, he wouldn't know or care (not that I am advocating for people to hate him).
Hate may be a four letter word, but it should be ok to say when we are unhappy, sad, disappointed, etc.
Saying I love autism would be a lie. Saying I accept it is another thing.
I accept and completely love my son.
Then stop contributing to what we go through every day of our lives: a world that hates "the autism", namely, US.
DeleteAutism is NOTHING like fatal diseases. It is not fatal, except in that living in a world where you are only part human makes you an acceptable target for murder.
Excusing distaste for us as "hating autism" does not help.
I think it generally can only make a person feel worse if their parents are upset about how hard the person's life is. After all, for people who are born disabled, that hardness is just life.
DeleteDon't be so sure that your son doesn't understand hate directed towards him. Treat him, always, as if he does.
DeleteHe probably does, just FYI.
If your child was born blind would you say that you hate blindness? Would you want your child exposed to the message that "we love our children but we hate that they cannot see"? Would you think it tragic that she may never see a flower or a tree the same way you do? Would your child think she was suffering because she "saw" things differently than you? If your child was distraught because she was having some difficulties learning to navigate this world as blind person, would you blame and hate the blindness? Or would you look at the world we live in and realize how unaccommodating it still is? And if your blind child was on the internet and came across a post such as this or blog where the parent talks about how much she hates blindness and your child comes to you and says how much that hurts her, what would you say? Would you tell her you agree with the parent blogger and that you are entitled to your feelings. And that she is wrong for not getting how hard her blindness makes life for everyone and that she just needs to be more understanding? Or would you listen and try to see things from HER perspective?
DeleteTo Jaynn who wrote: I do not suffer the effects of being on the spectrum. I suffer the effects of living in a society where merely being different can be crippling... That is beautiful and succinct. Thank you for that insight!
DeleteWhile I agree that using terms such as hate can only stir negative emotions, I would also argue that is virtually impossible to not be conflicted by a diagnosis of Autism. Us humans are a complex species and this is specially true of our children. My fear is that too often we fall in the trap of making reductive arguments for an issue, or host of issues, that is extraordinarily complex. A reductive argument/question will almost invariably yield a reductive conclusion/answer. In my case I am trying to shift from seeing Autism as a riddle or an affliction and now look at it as a mystery, a paradox inherent to my child's identity. Autism does not define him but it definitely influences every aspect of his life. (And our lives for that matter.) We fight Autism every but we also celebrate our son every day; there is no conflict in that. However, to get to that stage we had to be willing to embrace the whole child even if that meant embracing Autism too... and that was a Process! I am humbled by Autism every day but I am also lifted and strengthen by the love of my child and my family every day. This is not the path that I picked but, by all indications, this is the path I am meant to be in and I'm OK with that.
Autism is only the way I get sensory input, can't do small talk or lie well. It's the reason I love all people equally. It makes me a better person than the people I came from, a kinder person who isn't full of hate. Autism gives me hope. The only misery I find is in those who hate so deeply, and call my heart a disease. They want to cure my love for humanity. Despite how very messed that sounds, they never even think to go get help for themselves, or imagine they have any illness. It never comes out until they kill one of us.
DeleteYou use what is called, in rhetorical terms, The False Analogy Fallacy. The comparision between cancer and autism is not valid. Autism is intrinsically tied to my personality. You cannot separate autism from my perceptions, my cognition, my hopes, my motiviations, my feelings - anything that makes me ME.
DeleteCancer is an invasion of my body. Autism IS my body.
I agree. So sick of the "if you hate autism you must hate your child bullshit." Who are these parents who spout this? Parents love their children but would want an easier life for the child and for the family. Autism is no fun and if you trty to sell that it is then you are in major denial.
DeleteFor those who have Autism & are replying to this - thank you. My 2-year-old son was recently diagnosed & my husband & I are struggling to help him communicate better & trying to figure out what is upsetting to him, what is too much, what is not enough. He can't tell us what his experience is like. I have uttered "I hate Autism" in the past 2 months since our diagnosis, b/c I hate seeing my son in meltdown or crying & not know why. I will find a better way to express my frustration - I don't hate any part of my son - I hate my inability to know how to make him happy.
DeleteI Love My Children. I hate the pains I can't fix. I hate the tests my son faces so bravely. I hate having to go to 6 therapies a week with so many doctors appointments balanced in the days between. I hate who worn out we all get sometimes. I hate how hard it is to afford to do things right. I Totally Absolutely Despise fighting the insurance company for every little thing.
ReplyDeleteBUT I love my son's laughter, and my daughters strange way of connecting the dots in our world. I love seeing how strong they are and how far they have come. I love who they are.
Would they be who they are if they didn't have their labels? No. They may be easier or harder. They may be better in stores and worse in waiting rooms. But they are who they are because of what they have. Autism, and the other conditions are just parts of them not who they are (I know you know what I mean - you have said it)
I would change the fact that my son may not reach adulthood but not that he taught me to treasure all the time I have. I would change how my daughter stresses over little things but I would want to do that for my children that don't have Autism.
Does that all make sense?
It makes sense... but I'll side with the author of the original piece: how is that helping?
DeleteI specifically means: how does hating all the realities of your life with your son help you feel calm, at peace, generous, loving, supported, cherished, nurtured or whole?
Because for me, that's what it's about: you cannot continuously drive roads about hating things, hating experiences or hating reality along your neural network, and expect not to end up with an expressway to hatred and misery.
Wanting to change people (also known as 'reality') is not only ordering disappointment and frustration from a menu, it's also not acceptance.
What word would work better then Hate? Disappointed? Frustrated? Love? No, none of those are any better. My son HATES some of those battles (like PT) and I will not make his feelings less by changing the word. One that note, we both ACCEPT that we have to deal with those battles (like weekly PT)
DeleteI think the problem is that we all define things in our own way and while I can put the different "words" (feelings) into their place, others may see it as a jumbled mess.
My children know they are not the cause of my frustration. They also are aware of what causes their frustrations. It is better for them to have a word to describe what is going on. My daughter will say "Please leave me alone because my Autism is being loud" That means things are too loud but she knows that we aren't hearing it that way, that it is part of the autism. I know what she means and so does she, someone else might not.
By allowing myself and my children direct our feelings at what is causing the actual problem or relief then we can better deal with life. We can find our balance and our peace that allow us to be whole, loving, and supportive. Ignoring, lowering, or renaming the feelings doesn't make them go away or be dealt with.
We are still very new to the autism diagnosis. I have not entirely processed my feelings... But I know for a fact that one of those feelings is anger. Anger for the way that my daughter must work to get things that come naturally to her NT peers... Anger for all those hours spent in therapy... Anger for the loss of what we could have had.
ReplyDeleteDon't get me wrong, I accept my daughter and do love her just the way she is. Autism is a part of her and she would not be the same without all the pieces who make her who she is... But at the same time, I need to give voice to my feelings about autism. Keeping them bottled up because I'm afraid of hurting someone - even my own child - doesn't do either of us any good.
With your wisdom and experience (and I mean this is all sincerity), what do you suggest? I know you have such a serenity about Jack's diagnosis and I really want to get there... And I can't imagine that this happened overnight - so how did you get past your own anger and loss?
And thank you again for sharing your wisdom... You are an inspiration to me along this journey.
It takes time. Time to process, time to accept, time and experience to gain the wisdom. Pray for your child and her caregivers, pray for understanding. Pray for the wisdom.
DeleteDo not take your anger and loss out on your child. If you need to voice your feelings, do so away from your child with another adult - this is not just because your child has autism, but because ALL adult business should be between adults and not between adult and child. Show her love and love and more love.
Read everything, the good and the bad. Let the bad teach you what not to do, what to fight against and let the good become who you are as a parent everyday. Having a child with autism is a blessing - Having a child with autism is a blessing. We have touched so many lives and I believe put a spark back in those teachers, doctors and therapists who may have become complacent. Become THAT parent who others respect and find inspiration in you and your daughter rather than the parent who sulks about a diagnosis (not saying you are, but they are out there). Read "10 things every child with autism wishes you knew" - it changed my parenting life. Research every little quirk in an effort to get into her mind and reach her on her level.
My daughter has autism too. I've known for five years. Emma was completely regressive; became non-vebal, lost skills she had, headbanged and was a threat to herself. She was that sterotype on TV. She is now in 1st grade, making friends, reading above her level and a whiz in math. We have obstacles to overcome still but she is a miracle. The diagnosis was hard, but get it in your mind that you are determined to fight for her in every way. A diagnosis is a word to describe your child, not THE word. Much love to you from one mother to another. :)
I am afraid you miss the point when parents say "I hate autism." Because I can honestly say, as you know, that "I hate autism." But I hate it because how it makes life so much more difficult than it needs to be for my boys. Every part of their life is more difficult than necessary. They miss out on the basic things that others are able to do: slumber/birthday parties, playdates, their junior year abroad, preforming in a play, walking into a room and being able to converse with strangers, being independent at a typical age...serving their country.None of this is going to change with "acceptance." I've said this before and I will say it again.
ReplyDeleteDo you love the meltdowns, the trauma, the alienation, the depression that many with autism deal with? Have you ever heard your child wish they were dead because they had no friends? Have you seen your child cry becasue they are so lonely and have no understanding of how to make friends? How about the sensory issues that prevent your child from enjoying a movie, a type of clothing a particular food? How about the completely nonverbal child or the one who needs to still wear diapers as an adult? How is a parent supposed to embrace any of this as good? A part of your child? Sorry nonsense. All of this is due to their autism.
So yes, I hate the emotional upheavals and trauma that my children go through because of their autism. I do not need to embrace it in order to demand that the world accept them for who they are and for the world to understand them. I do not need to embrace autism in order to demand that the colleges and jobs provide them accommodations, acceptance and understanding. I see what my children are missing out on in life and that is what makes me angry and I am allowed to be angry at autism becasue it spurs me on to do something on behalf of my children to make this a better world.
BTW anyone who reads this comment I have taken my children from PDD-NOS where the doctors thought my oldest would spend his life institutionalized to the point that he is applying to law school. I know better than you how to raise my children, how to deal with them and what to do for them.So keep your self-righteous, self-important thoughts to yourself. Not interested.
This is exactly how I feel. Congrats on your son applying to law school. My son is 3 and I am doing everything I can so that he can "apply to law school" one day.
DeleteI have to also say that it is the height of chutzpah for someone to tell another human being how they are entitled to feel about a situation. Then to even tell them because they feel this way they are endangering their child is just plain wrong. To also assume that because a parent feels a certain way they say it to their child or intimate that they dislike a part of their child is beyond the pale.
DeleteBrenda- you know that I am a fan of yours but I can't tell you how much you have insulted me with this post. What I have written here doesn't even begin to touch the surface of how judgmental and hurtful think this post happens to be.
My parents loved me and hated autism. I felt the hate. I am nineteen years old, a full-time student headed for law school and working for children like yours in the public schools thereafter. Outwardly, anyone would call me successful. Inwardly, I struggle. Read this and see if you still think hating part of your child is acceptable:
Deletehttp://www.thinkinclusive.us/passing-how-to-play-normal/
Brenda is not being harsh. She is not being judgmental. She took the time to point out a wrong she sees with civility, tact, and grace.
"Do you love the meltdowns, the trauma, the alienation, the depression that many with autism deal with?"
DeleteDo I love those? No. But respecting, loving, and taking care of myself the way I am helps those things so much. Hating them makes it all worse. Those things are *symptoms* of hate. Those are symptoms of being made ashamed of part of yourself.
I don't *never* have meltdowns now, but learning to love and respect my autism has made all of them ease up to a rather incredible degree.
I have to tell everyone, my children do not think they are hated or even feel hate. They are self-possessed youngmen who know who they are and have ideas for their future. They are able to define themselves and who they want to be. They have no shame and do not hesitate to tell the world about their autism. We have always taught them to be proud of who they are.
DeleteR. Larkin- I am sorry that you felt some kind of hate from your parents. But your parents are your parents and not everyone's parents. I know how my children feel about me because I actually ask them. And you are working to help children on the spectrum but not my children. Mine are older than you.
chavisory- I am glad that you are able to handle your meltdown alot better now. It takes alot of work and fortitude to do that. I hope you are very proud of your accomplishment. There is nothing wrong with "hating" something about yourself in the regard that it leads you to do something about it. Without sounding obnoxious, do yo think that NTs don't have things that they hate about themselves? We as human beings do not have to like everything about ourselves. Not liking something about ourselves is the impetus to better ourselves.
Sorry but Brenda is being judgmental about other parents. As I have said before, I happen to be a fan of her blog and her albeit its only in cyberspace that I know her, but noone has a right to tell another parent how to feel about any situation that they find themselves. She is also only beginning her travels in the world of autism and parenting, she has no idea what is to come and what situations she will face. Telling those of us who have been at this for decades how we are to feel and what we are to do is presumptuous. That by the way goes for anyone who is not a parent, who has not parented for a long time even if you are autistic yourselves.
Yeah, I am proud. And you know what? It took LOVING autism.
DeleteI'm still pretty fuzzy on how NT's think and feel in general, though I'm sure that many of them do hate things about themselves. I see the evidence of this in how they treat themselves--badly--and how they treat others--with hate.
Everyone doesn't treat each other with hate or dislike. In fact the world is full of people who do wonderful and good things. The fact that you can only see the negative in society is not a reflection of society but quite frankly your perspective and your perspective alone. In fact it is becasue people hate certain things, like cruelty, ignorance and evil... that there are good things that are done in this world..I am truly sorry that you are unable to see that. Perhaps maybe one day you will.
DeleteThat you are proud of who you are by loving autism.I am glad you found a way to accept yourself. but it how YOU and YOU alone dealt with yourself and your issues. You do not have a right to tell anyone else what to do or how to feel or quite frankly how to parent either.
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DeleteI don't believe that hatred is ever a good thing. I'm going to post a fuller response on my blog, but there are good reasons to end hatred and negativity. It's not just for the reasons why hatred is a bad thing for others, but I know what hatred does to the people who hate.
DeleteTrue hatred is inexcusably dangerous when it's applicable to more than just an idea, and even when it's only an idea you hate, it damages you. It is horrible, wretched, and damaging to the person from whom it originates.
The post I made can be found here: http://shinobu-no-okami.autisable.com/760950143/hatred-in-the-autism-world/
This could apply to anything, though.
Blogs are what they are. They are not capable of showing you how our love of our children and our hate of their autism play out in our homes. We are all entitled to our opinions on this inflammatory topic, but I don't understand the judgmental approach.
DeleteIf someone is brave enough to share a feeling (barring the obvious, rare lunatic who is planning murder), that feeling is valid - even if only for themselves in their own context. Comments and discourse are welcome, because it's out there, but judgment???
I bet many parents, if they are deeply self-aware and honest, wish their kid was better at sports. Or the homecoming queen. Or scored in the top percent on the SATs. Because we are parents, and we want our children to lead conventionally successful lives. We learn that people with autism can live very happy, successful lives, but they will struggle getting there. Is it so horrible that we wish for them less of a struggle?
I have no problem if my child is gay. I really don't. Do I wish it and encourage it and talk about it all the time? Of course not. If he's gay, he will face additional struggles. I would and do wish all differences were accepted in all of our society. But, they're not. And as much as we have the power to influence others's acceptance through blogs, words, walks and status updates, it doesn't mean we are thrilled seeing our child struggle.
However, most of all, please never, never, never blame a blogger for causing a parent to irrationally hurt their child. If there are some crazies out there, they are out there. They should not lessen the access and freedom for those of us needing healthy support as caretakers to find it.
I love my son- I love his quirks, I love his honesty and I love his complete lack of judgement for anyone else. I can and will say that I hate autism some days. On the days he just can't function- where everything is too bright, too loud, too something. The nights when he doesn't sleep, the looks on the kids faces that just don't get him at all when he is talking completely in movie and TV phrases- or meltdowns because "something" is wrong. Yeah- I DO hate autism on those days- and those days used to be a lot more frequent. As he gets older he is doing so much better- so the days that I hate autism are less. But just because I hate autism does not mean I do not accept my child- nor hate HIM in any way. I equate it to any disease or disorder- if he had cancer would I NOT hate the fact that this insidious invader was making him sick? Why on earth would I ACCEPT that? For me- it is the same with Autism.(on a much different scale of course- NOT comparing the two things but in a completely metaphoric manner) I say it all the time- Autism DOES NOT define my son. He is who he is and autism did NOT make him that way.
ReplyDeleteSpeaking as someone with autism, the fact that you accept your child but don't hate him is irrelevant if you say that you hate his autism. There's a good likelihood that's not what he hears, or how he interprets it. When someone says they hate my autism, I take that as a personal affront. I can't NOT take that as a personal affront. I am autistic, and it pervades so much of my demeanor, my look on the world, my habits. I can't imagine myself free of autism - and I don't want to. Also, autism isn't like cancer - cancer is deadly, and it has nothing to do with personality.
DeleteImagine telling a child who was born with a low IQ: "I like you, but I don't like your low IQ." Of course they're going to take that personally.
My son was diagnosed on the spectrum last week. I think people are missing the point of her post. It's ok to feel the anger and disappointment and heartache for your child, family and even your marriage. But I pray that no one ever says they hate autism to their children. I totally understand where she is coming from. This is part of who they are, and just as there are hard times, there are beautiful things that you would never have experienced without your child having autism. You have to love an accept and find the good, so your child can too. No one is saying to bottle up feelings, but imagine someone saying they hated a part of you that you were already struggling with? I don't hate autism. I love my children and that trumps all my other feelings. I think the female comparison is spot on. Or imagine your child tells you they're gay. Can you truly accept them, but say you hate the gay part of them because of all the difficult times it has brought?
ReplyDeleteThanks for sharing.
an important point you've made: being gay or autistic is not something separable from identity, despite what some other posters write. saying 'i hate autism' is not separable from 'i hate a part of you'.
Deletei've had people say to me that they hate that being gay makes things hard for me, and that they wish i wasn't, 'for my sake'. whatever. i'm sure it would make them more comfortable, but not being gay, or not being autistic would be absolutely no good for me. i would NOT, in fact, be me. i MIGHT be someone you could love, but i wouldn't be me.
That's a good point, Ben (I wrote the latest post about gay struggles before I saw this). So I might again point to the orange hair story. If someone is not comfortable with you being gay, that really is their problem. They might not be friends with you, sadly. However, some of our children with autism take over whatever room they are in. Autism is somewhat imposed on others, whether they chose to be friends with us or not. Openly gay couples might annoy those less tolerant, but they can carry on with their lives at the next table. Your parents can still go out to dinner with you. This is not always the case with autism.
DeleteI think that the whole "I hate autism" thing comes from the idea that autism is a curable disease that our children have somehow caught, and that it can be cured. Like, "I hate cancer". Once people accept that it's not an apt comparison, then perhaps the "I hate autism" disappears.
ReplyDeleteThis comment has been removed by the author.
DeleteUm, so, I never would have wanted to kill myself if my mom didn't have the whole "hating autism" vibe. Cuz I am really really nonperceptive about other people's feelings, but I thought she hated me.
DeleteShe probably did.
Jussayin.
I love your blog posts Brenda. Thank goodness for parents like you who get it. It gives me hope for the world that my autistic sons will inherit. Perhaps all autistic people will one day be perceived as valuable and will be able to develop self-esteem thanks to efforts like yours. You make a positive difference in a very negative world.
DeleteI hate autism the same way I would hate cancer if that is what we were dealing with. I hate that my son is 12 and can't have a conversation with me. I hate that he can't tell me why he is upset or what he is scared of when he is clearly upset or sad. I hate that someday he will have to live in some kind of group home because he will never be able to care for himself and because of his communication issues will he think I have just abandoned him there because he does not understand. So yes, I can hate autism.
ReplyDeleteAUTISM IS NOT CANCER.
DeleteWhy is this so hard for people?!
Me, me, me, me, me. I hate that my son is 12 and can't have a conversation with ME. I hate that he can't tell ME why he is upset. I hate that someday he'll have to live in a group home and will think I have just abandoned him there.
DeleteIf you're going to hate autism (which, as an autistic person, I strongly resent), please at least hate it for reasons that have nothing to do with you. It's his autism, not yours.
But what does your son feel about it?
DeleteThat is whose opinion matters.
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DeleteMy son does not have the ability to tell me how he feels about it. I hate that he is trapped in a place where he cannot communicate. Do you think he is happy there? I watch him every day and I see him cry and rage because we don't understand him. What should I like about that?
Deletei don't know what goes on inside another person's head, any more than they understand what goes on in mine. i can say, that the days i rage and cry, have more to do with intolerance and misunderstanding than anything about me. if i was interested in the blame game, i would place it squarely at the feet of those who expect me to be more like them, all the while hating the fact that i'm not, and cannot be, like them. i know it would be easier for everybody if i was like them, instead of being so dreadfully different, but making it easier for the majority is not tolerance, it's submission.
DeleteIt sounds like you've made a lot of decisions about what your son can and cannot do. I'm really glad my mother didn't make those kind of assumptions about me or plan to put me in a group home by the time I was 12.
DeleteGreat perspective. I really try to avoid saying "I hate Autism", because I am afraid my oldest, who isn't on the spectrum, would think we hate his brother, who he knows has Autism. Words can so easily be miscontrued.
ReplyDeleteAnd I love your declaration of Autism Acceptance Day!
Thank you, Brenda, for "getting it." Not everyone does, not even the ones with "successful" kids.
ReplyDeleteThere are "successful" kids carrying around a lot of damaging hate and self-hate and trauma that they don't talk about or that comes out when dealing with not as successful kids or people with other disabilities. Just because a kid gets through law school doesn't mean your kid hasn't internalized the messages you talk about here. It doesn't mean they won't have some serious self esteem issues. It doesn't mean you've done the best by a kid- just that you've achieved an outcome, and an outcome alone is not holistic success.
If it were, then Animal abuse, child beating, and blackmail would be "successful" despite emotional damage just because the desired behavior is achieved in the individual. And these are ALL things we recognize as unethical. Immoral, even.
Autism is not like Cancer. It's not like AIDS or even Diabetes. Autism describes the *actual wiring* of a person's brain, their actual neurology. The way that their brains make connections and carry neuro-impulses that make up thoughts and movements. And Rewiring someone's brain on that level means you utterly change who a person is. I repeat: it changes who a person is to remove the Neurology of Autism.
Teaching skills is not curing Autism. It's teaching skills to someone whose brain might work and learn differently than yours.
Be angry at a system and a society that says that your child is less than, That denies your child the tools and teaching that is accessible to them. Be angry at a culture that says that the accommodations they need are "impossible." Once, making the public accessible to the Blind or to people who use wheelchairs was called "impossible." Never never never give up fighting for your child. Just please, don't fight against them.
Brenda, you remain my spot of positiveness in Parent blogging. <3
No- Autism is NOT cancer or any other physical disease- wait- except that it CAN be! How many kids have very real physical ailments that go along with an autism diagnosis?
DeleteMy other kids are amazing as well- my oldest is an amazing artist- but that doesn't DEFINE WHO he is... my middle child is an amazing writer- this doesn't DEFINE WHO she is. My youngest has autism- but he is a sweet, loving, amazing kid who would STILL be all of those things MINUS AUTISM- I know it. I advocate daily for my kid- for education, to be included, period. Yes- maybe it's society in some ways- but it is also that damn autism that makes so many things so much more difficult for him than a neurotypical child. So screw autism... I do hate it!
Having a co-morbidity- Including things that might share common genetic components- is not the same thing Dawn. I personally have co-morbidities that I do treat. I have Fibro myalgia, lactose intolerance, and irritable bowel. While there may or may not be some aspects of genetics that are in common between my autism and my IBS, they are not the same thing.
DeleteMy mother has gluten intolerance. When she treats her gluten intolerance by not eating gluten, her other health issues aren't as severe- her fibro pain isn't as bad, she's able to focus easier with her ADD, and she has fewer narcoleptic episodes. The Gluten intolerance didn't cause her fibro, ADD, or Narcolepsy, but leaving it untreated did make those worse. It is the same with leaving co-morbidities untreated with Autism. Unfortunately many people see reduction in acting out as meaning it is treating the Autism instead of treating the things that makes a kid more easily frustrated because of bad health.
I think you missed my point on Neurology.
There are "successful" kids carrying around a lot of damaging hate and self-hate and trauma that they don't talk about or that comes out when dealing with not as successful kids or people with other disabilities.
Deleteding ding ding AWESOME
In no way did I miss any points. Having raised to "normsl" kids and watching them hit theior milestomes and watching them make friends and watching them NOT struggle with everyday mundane thin gs I do HATE what this has done to my youngest child. HE is awesome. I am sorry- I just don't get it. How can anyone DEFINE themselves by a disability?? It is NOT what makes you YOU. Your actions, character and personality do that. I can not say what my boy would be like without autism- but looking at my other kids I can say he would probably be about the same. Funny, silly, smart, and just as wonderful as he is NOW...just without all the headache and heartache autism can cause. He KNOWS how much I love him... he knows he is my world. So- like I said AUTISM DOES NOT DEFINE MY CHILD.
DeleteSounds like someone has a bad case of NOT MY CHILD.
DeleteIt may come as a shock to you, but autism does define who I am as much as my gender, race, sexuality, family, and life experiences. It defines the way I think and how I respond to others.
I'm kind of amazed that disability is so obviously distasteful to you, that you are apalled that "anyone can DEFINE themselves by a disability". Never doubt your child knows how you feel.
I value that each of us has the right to express ourselves, and have sought out a community of understanding parents to do so. Certainly I love my child, and embrace everything about him. And certainly his challenges make me feel frightened for his future, and overwhelmed at times in the present. I love him so much that I know I have a place to go to (blogs) where I can vent anonymously. It's a wonderful thing for us to be able to respect each other's feelings and opinions, and allow us to have those feelings and opinions, without making someone feel "wrong".
ReplyDeleteHere all this time I thought I was pretty enlightened! Ha, you showed me!! And thank-you. One love sista.....
ReplyDeleteIt's interesting that you posted this in the context of autism 'acceptance' day/month, because I think some of the 'hate' might actually be persistent 'anger' as it appears in the stages of grieving. I've been through all the stages and sometimes I regress, but I'm most at my center (and Finn is also happiest) when I'm in a state of acceptance for who Finn is, lock, stock & barrel. Thanks as always for the thoughtful post, Brenda.
ReplyDeleteI love this so much. I don't even really have an adequate comment because you said it so well in your post. I just want to say thank you for writing it.
ReplyDeleteThank you for this post - I feel it is spot on. Many self-advocates and advocates are speaking out on this topic lately, and it certainly seems to be a touchy one. Acceptance - isn't that what we all want, ultimately?
ReplyDeleteI love you, Brenda. You get it. You really, really get it.
ReplyDeleteIt's not about suppressing one's feelings of anger or grief at a child's difficulties. It's about how to express them responsibly with the awareness that they have an impact on the autistic person, on family members, and on societal attitudes.
It really doesn't matter whether one thinks that autism is separate from the person or an intrinsic part of the person. Saying that you hate something about a person is destructive to the person's self-esteem and to the level of acceptance he or she will find in the world.
Those of us who are autistic or otherwise disabled have lived with the consequences of this kind of talk and know the impact very, very well. We have the wisdom of having experienced these things firsthand. It's time for people to listen, as you have, to voice of our experience.
I'm beginning to think I must have missed something in the grieving process because I can't remember ever feeling "angry" about my daughter's diagnosis. Sad and overwhelmed, absolutely. But never angry, even at the very beginning -- except, maybe, with myself a little, for not being able to figure out something was "different" more quickly (she was diagnosed at 2.5 years, so in hindsight I imagine I probably "discovered" it as early as I could have.)
ReplyDeleteI feel uncomfortable directly addressing this subject because my daughter is so high-functioning. At twelve, she's pretty much mainstreamed into middle school classroom settings. She can hold (albeit somewhat awkward at times) conversations, she can communicate, she can perform basic self-care activities, and I'm pretty optimistic about her future. So when I say, "let's accept autism," I feel like maybe I don't have the right to say that, because A. has been so successful.
So I thank you, for knowing that you *do* have the right to say what needs to be said, and for saying it. I know I'm not the only mother who appreciates it.
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ReplyDelete"I can't feel anything but hate for the thing that is making her feel that way."
DeleteWhy would you assume that autism is making her hate herself for having autism, instead of realizing that it's a hostile society which is teaching her that there's only one kind of brain it's okay to have?
I mean, I guess when a gay kid feels suicidal because they hate being gay, you could technically say "I hate gayness because this kid feels suicidal and hates being gay," but it's weird to ignore the fact that societal prejudice has made them feel that way. And it's the same with autism.
Thank you Brenda for writing this post. You perfectly described how so many of us feel about our child(ren)'s diagnosis of autism. We love and accept our children no matter what.
ReplyDeleteI read all of the comments posted and some I strongly disagreed with and others left me wanting to give a virtual high-five to the commenter.
My fear is that the parent who says "I hate autism" may not realize that their child with autism is much more in-tune to what is being said and done around them than they think. Just this week I read the book, "The Golden Hat: Speaking back to Autism" and also watched the accompanying book, A Mother's Courage which is about individuals on the most severe side of the spectrum and their first words and thoughts after learning assisted technology. In the book and film there are children in their teens whose first words to their parents were things like, "you need to listen more." or "Teeth...hurt...HELP". Carly Fleishman is just one of these examples of individuals who were thought to be incapable of communication and intelligent thought. Well, she sure showed them!
So, I ask those of you who say "I hate autism" around your child. How do you know they don't understand what you are saying? How do you know their meltdowns are not triggered by your own behavior towards them?
Simply...you don't!
I like what Crackedmirrorinshallot had to say: "Be angry at a system and a society that says that your child is less than..."
ReplyDeleteThat, to me, is the source of the anger and hate. Do I feel pain for my child's struggles? ABSOLUTELY. WOuld I like to change some of the behaviors he has? SURE. But I can't hate autism any more than I can hate his heart defects, his hearing and vision issues...they make up who he is. And who he is is pretty damned incredible. His path will look very different than we imagined before he was born, but...my own path looks so different from what I imagined years ago. No one gets to choose their life, but they do get to choose where they put their energies in this life.
I love this...I think a lot of people are missing the point. HATE is a very strong word. I know myself, if I said that I hated autism in front of my 2 boys on the spectrum, they would automatically transfer that to mean that I hate them, I hate who they are. We are certainly entitled to our feelings, I am not denying that, but vocalizing it with such a strong word can hurt my children emotionally and mentally. I totally relate to what you are saying, Brenda, and I thank you for saying it.
ReplyDeleteOh, sweetie. I don't even know where to begin. Thank you for writing this. Thank you for saying what I feel. You put it so well I don't have the words I need to make you adequately understand how deeply this affected me. Let's just say it was very deeply. :) You seem to have hit the nail on the head.
ReplyDeleteI've never been angry over autism, even after I was told myself that I'm an Aspie. I accept my way of veiwing the world because it's just how it is. I accept my children's views of the world because that's just how they are, too. I can't change them, I can only help them. Our communities can't change our children, they can also only help them and love them as we do.
I feel like what you're asking is for people not to say they hate autism because of all the hard things that come with it but to be grateful for our children just as they are because they are still our children, Autism and all.
Open your hearts. Open your minds. Love everyone, every ONE. See my son's precious smile instead of his flapping hands, see his brother's gentle touch instead of his lack of eye contact, see their sister's helpful heart instead of their need for help. Be the change you want to see in the world. You can only gain acceptance by accepting.
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ReplyDeleteAm so right here with you on this. I've read the post, the comments, the vitriol towards a parent who says they "Hate Autism" and I'm actually really sad. I'm sad that we now being forced to either justify or magically change our "hatred" of autism into big, squishy puff hearts and glitter and unicorn glitter. I can hate the autism and accept it at the same time. I can hate the hurt, struggles, frustrations and lack of compassion for those with differences - AND STILL LOVE MY SON. That doesn't make me a shit mom. I don't run around shouting I HATE AUTISM to my sons. I DO vent it to other parents who can/may relate. Parenting is hard. Parenting a special needs child is incredibly hard. We already have enough guilt to eat on for the rest of lives. I don't need anyone jumping me because they don't agree with the terminology I use to express my frustration. This has split our community and divided us. Kudos to whoever started this shit. They must be thrilled at the in-fighting they see. Rather than supporting all of us, we are now into separate camps. Great.
DeleteKelly, it doesn't make any sense to me that you would equate "hating the lack of compassion for those with differences" to "hating autism". The lack of compassion is a societal problem of prejudice against those with disabilities. We didn't cause that prejudice by having autism, and we don't deserve it!
DeleteAnd that's the problem with hating autism - it re-frames problems or prejudice as problems with us, the autistic people. A lot of us believe that the way to improve our lives is to get rid of this prejudice, not to get rid of autism.
And Jen, when you say "acceptance is people not yelling at me when my kid has a meltdown," you're making autism acceptance about you, not about autistic people. It needs to be about making our lives better, not about non-autistic people.
Kelly, I don't expect unicorn glitter, but the thing is that when people "hate autism," it makes the world an actually more dangerous place for us.
DeleteAnd no, you cannot hate and accept at the same time. How do you treat things you hate? With respect, patience, or compassion?
How can you not hate and accept at the same time? I hate AUTISM... I LOVE my SON. And I treat him with respect, compassion and patience EVERY DAMN DAY. HE is NOT AUTISM. He is my handsome little man who makes me laugh daily. SCREW AUTISM. I am not who I am based on the fact I am diabetic. I am not who I am based on the fact I am OCD. These are things ABOUT me- not WHO I AM!
DeleteIs it just the word "hate" that you object to? Because you can accept something that you also don't like. I don't have to like autism all the time to accept my child for who he is. I'm not really a fan of autism most of the time, but that doesn't mean I don't completely accept and embrace my son for who he is and all that he does. If I said "I'm not happy with autism right now" is that better?
ReplyDeleteMy other son, NT, comes with his own set of difficulties and challenges, and I hate and/or dislike and/or am not very happy with his daily dramatic meltdowns, but I also just accept them as part of him. I don't see it as being any different.
Right on, Jill.
DeleteTHANK YOU, voice of reason! :)
Delete"You can accept something that you also don't like." No... no you can't, when it comes to something that is a part of the wiring of someone's brain. Say your son is gay. You can't say you don't like his gayness, but you accept it. That doesn't make sense. If you accept it wholeheartedly, you'd accept it wholeheartedly. There wouldn't be the "but I don't like it" at the end.
DeleteMy opinion--yes, "I'm not happy with autism right now" is way, way better. And much more useful for thinking through how to actually deal with whatever about it is causing stress.
DeleteI mean, any parent can reasonably be "not happy right now" with any child, or any behavior of a child.
I don't hate my autism. I love it, frankly. I accept it. We have fun together. But I am OFTEN not happy with it right at any given moment.
Chavisory (if that's even your REAL name) your 2nd paragraph was kind of my point in the beginning, that, IMO, it's about bad parenting more than it is about autism. To respond to R. Larkin Taylor-Parker up there who said "my parents loved me but hated autism and I felt the hate" well, my mother "loved" me but hated that I wasn't as perfect as my older brother and you can bet your ass I felt the hate. Shitty parenting has nothing to do with your child having a disability, it's just about shitty parenting.
DeleteVery well said - but there are still days when I say I HATE it...but in a general every day sense- I totally understand what you are saying
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ReplyDeleteVery well said
DeleteOne more thing! I'm copying and pasting something I just wrote on Facebook so it might look familiar to some of you ;)
ReplyDeleteThis kind of thing is not at all autism specific, it's just sloppy parenting. My mom used to say horrible things about me, around me, to me, etc, and I'm 100% NT. It messed me up, but good, but as as result I've been VERY mindful of how I react and speak and behave around my 2nd born, who is EXACTLY like me, in freaky, scary ways. But that doesn't mean I have to "like" it all the time. The same goes for my oldest son's autistic behaviors. I don't have to like it, and I can express my feelings about that, but I can do it in a way that is also mindful of his feelings.
I can completely relate to what you said about how you were treated as a child Jill.
DeleteGrowing up I was told I was fat and that no man would ever want to marry me unless I was skinny and had long hair and manicured nails. I was put on my first diet when I was 8 and told I couldn't go trick or treating because I was too fat. It would surprise no one to know that by the time I was a teenager I had a raging eating disorder and withered away to 92 lbs at 5' 10". Then I went and swung the opposite direction and was severely overweight. I really believe if my dad had just kept his big mouth shut and told me I was beautiful just the way I was I would have grown up feeling loved and accepted no matter how I looked.
I would never say I hate autism in front of my son. But I get to have a space (blog) where I can talk about my feelings about our challenges. Maybe I will say I hate it, or am frustrated by it. And it's okay for me to feel that way sometimes. Because I'm good enough, and smart enough, and doggone it, people like me.
ReplyDeleteAnd the point others are trying to make is think about the impact you may have on others. And that the world does not just involve you and your feelings.
DeleteI do not understand parents who say they want the world to better understand their children but then do not make any attempt to understand the perspectives of autistic individuals.
If you want society to better accept and understand your child's voice someday, please try and see things from other autistic voices today. And recognize that is not about YOU.
I have made a point of being involved in as many older autistic people's lives. I have volunteered in many settings and have met some amazing people on the spectrum- and I have heard MANY opinions, viewpoints and ideas. I may not agree with them all- but I do have a little bit of an understanding at least of what life is like for an autistic adult. It is NOT about me- not in the grand scheme of things- but within my home and y life- some days I CAN and WILL make it about me- if only to myself while hiding in my room. Then I will put on my big girl panties and deal with things as I need to- helping to teach MY child the things he needs to know. First and foremost- I love him with all of my heart.
DeleteThis is somewhat related -- one of the things I realized as I was pouring over old journal entries is that I've *always* written my blog entries as if my daughter might be able to read them one day. That means I've often been very mindful of what I've disclosed online -- which admittedly means I've left out a lot of the really hard stuff, messy stuff, embarrassing stuff, etc. Does anyone else write their blog in this fashion?
ReplyDeleteFor what it's worth, it's a good thing I was always careful about what I shared on my blog. Because guess who I discovered reading it a little over a year ago (and I had no idea she'd ever find it or even be interested)...
Yep. My daughter. Thankfully she seems pretty pleased to be the "star of the show." I'm just glad I'd always kept that in mind when I was writing! :-)
Neurodiversity- (n) an idea which asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be recognized and respected as any other human variation. (Urban Dictionary | Wikipedia)
ReplyDeleteBrenda, thank you so much for your modeling of boundary-setting that is not violent.
I am a neurodivergent person who was raised in the 1960s by a mother who did backflips and all-nighters to try to figure out how I worked, what would work for me, and why. She fought for my rights at schools that not only didn't recognize me as unique, but punished me regularly for the behaviors I displayed. Being in school and being outside of our home was a grueling chore most of the time.
But at home, with my mom, I could breathe. I could think my thoughts, do my art, have my privacy .. and check in with her about things that confused, angered, or terrified me. She was in no way a perfect mom. I've got four other siblings who have endless complaints about her. But for a little neurodivergent kid trying to survive the unearned and unwarranted privileges given for free to neurotypical people -- trying to survive the neverending subtle, overt, pitying, and outright rude-ass expectations of "normal" people, she was a life raft. A secret garden.
And you know what? I also had "curable" issues as well ... depression, hyperactivity, PTSD ... and her approach was to help me manage them in whatever way we could. But I never once heard her say that she hated any aspect of my challenges, of my troubles ... of the very things that made me unacceptable to the outside world. The posture she showed me was not one of a fierce lioness attacking my struggles, my neurological differences, or my mental illness.
Instead, I felt her standing in front of me, around me, behind me as a kind of boundary against a world that didn't respect, welcome, understand, or make room for anything about me. What I felt, even amidst all the unreasonable, unrelenting chaos of my childhood, even from within my rages and terrors and anxieties and lashing out -- was that she was standing with her feet firmly planted, staring down the outside world with all of its everyday crimes against humanity and saying, "This child has value, and you may not treat her in any other way."
And this is a form of anger. It's not anger that grabs a knife and threatens everyone. It's anger that stands with calm assurance and sets boundaries around the vulnerable.
Now that I am an adult parent of a disabled man, I know what it is to want to take the challenges our children face out into the back yard and beat the bloody hell out of them. But here's the thing: The challenges our children face are not so much that they are neurodivergent; instead, they face challenges because the expectation is that they should be normal.
DeleteSorry, but that's nothing to aspire to when what you've got is a fascinating individual with a very different way of experiencing the world.
So I'll kick that expectation of normality to the ground and protect my son's dignity and individuality (to the extent that I can). My anger will be pointed away from him and toward the expectations that actually create the problem and make his life less workable.
Additionally, the challenges that our children face are not only due to the fact that they are in pain, or because their bodies do unusual things in response to foods, sounds, sights, or interaction (etc.); they also face compounded challenges because those things are often viewed (by the people who love them) with panic and despair because they're not "normal."
Normal for whom?
We all want to help make the lives of our children as workable as is humanly possible. But if we continually transfer unexamined and unchallenged expectations of "normal" behavior into neurodiverse or health-challenged children, we'll actually be adding to their suffering and sense of isolation.
It's difficult to live as a neurodiverse individual in a world full of the endless expectations of blindered, unaware "normal" people. I empathize with the pain of parents who look at the way the world works, agonize about their children's future, and turn toward Autism (or any other thing that sets their children apart) with rage and hatred. I get it.
But I also know that the rage and hatred will leak out all over the child, the home, the family interactions, and the parenting decisions -- because the rage and hatred (if they are the emotions we want here; they may not be) are not being focused in the right direction.
I don't mean to suggest that we turn toward the expectations of normalcy with a fierce "Suck it, NT culture!" But this concept of Autism Acceptance IS a civil rights issue, and civil rights movements don't ever occur in a way that feels comfortable to everyone.
Neurodiversity is a fact; it's not a disease to be hated. And in terms of things that ARE diseases (such as depression, IBS, etc.) hating and warring against them may seem valiant, but when the diseases do not respond to any treatment, what do you do then? Can you only be happy when the disease has been pounded into the ground? Are you only a winner if you don't have the disease?
These war models are very troublesome; this hatred and rage is very troublesome. I understand it, but I also know how I would have felt if my own mother had been stomping around the house or around my life trailing steaming rageclouds on my behalf.
I didn't need her rage and hatred; I needed her protection, and that's a very different thing.
I think perhaps the implication here is that if you say "I hate autism," that means that you ARE stomping around the house trailing steaming rageclouds, which is not the case. Many of us who have claimed to use the phrase "I hate autism," and I am one of them, do not direct our anger (if there is any) toward our child in any way whatsoever. As far as you know, in the privacy of her bedroom, your mother was venting to kingdom come about how much she hated autism, but her parenting style protected you from that. And if that was the case, major kudos to your mother, for being able to have her feelings about your neurodivergence and also doing a great job raising you as a neurodivergent person.
DeleteMy greatest wish, when my son grows up, is that he sees me the way you see your mother. As a protective force from the suckiness that is the "normal" world, and that's what I try to do. I work every day to teach both of my children that who they are is who they are, in fact that's a very common phrase uttered in this house: "That's just the way he is."
But I still hate autism sometimes. And I say that, sometimes. Never in front of my children, if I were to say it out loud it would be to my husband in our bedroom after the kids are in bed. Because this is my right, as a human being, to have feelings and to express them. That doesn't make me a child abuser, that just makes me a person.
I hear ya, jillsmo! My mom wasn't a venter; it just wasn't her style, so there were no steamy emotions coming off of her. Thank goodness; I had enough of those for both of us (and actually for the entire neighborhood and much of North America).
DeleteSo for me, naming emotions precisely and knowing which emotions we're talking about is crucial. If we're talking about hatred, then we're talking about directing a fierce amount of rage and a complete lack of acceptance at a specific target. Hate isn't discomfort or sadness or confusion; it's directed rage. And kids of any neurological type can pick that up. It's not a subtle emotion.
I'm wondering if the way the word "hate" is used could be an issue here? I can say that I hate skiing when the truth is that it makes me uncomfortable and insecure, plus it's expensive. I don't actually feel a fierce amount of rage about skiing.
So before we start threadwrestling, let me ask openly: When you say that you hate Autism, are you actually directing fierce rage and a complete lack of acceptance at the fact of it? Is the emotion of hatred indicative of the exact way you feel?
Very good question, I was actually thinking that same thing earlier. You are absolutely correct, it's the phrasing that's causing the difficulties here.
DeleteI can tell you with complete certainty that almost all of the time when I say "I hate autism," I actually mean "I'm feeling very frustrated for both my child and myself because he has such difficulty with his expressive language skills."
So, really, it's about brevity ;)
Wow... jillsmo and karla, this was a wonderful discussion. Thanks for having a very honest and respectful exchange and having it openly for others to see.
DeleteBravo!
Thank you Jill for being available to interact with me. I appreciate you!
DeleteI realize that, for me, saying that I hate something makes me feel kinda macho. Kinda like a tough chick. I hate skiing. Skiing sucks.
And people hearing me might never know anything true about me, because my pretense and crankiness is all they see. It's much quicker and safer to say that I hate skiing than it is to explore all of the pain skiing created for a poor child of a single mom raised in Marin County among the unthinking wealthy.
Our language is crucial, and it has tremendous power. There's a wonderful poem by William Stafford that I'll post in its entirety over fb, but here's a stanza that came to me as I thought about the importance of the way we communicate our pain:
"For it is important that awake people be awake,
or a breaking line may discourage them back to sleep;
the signals we give — yes or no, or maybe —
should be clear: the darkness around us is deep."
Honestly I do tend to throw around the word "hate" probably a lot more often than people would be comfortable with (much like other words I throw around often that make people uncomfortable) but when it comes down to it, I'm not really a fan of the sentiments behind the word. I think it's become kind of a catch-all for anything we have negative feelings about and I'm happy to re-examine my frequent use of the word, keeping in mind the context in which I'm using.
DeleteHaving said that, and this might be a reach, but as I have admitted my mis-use of a word that makes people feel personally attacked, and have promised to think harder about my word choices in the future, I wonder if anybody here would be willing to re-examine their word choices when it appears as though they are telling people how to feel about things?
Feelings are valid, and while one might object to the choice of words used to express them, one cannot dismiss them or claim that they are "wrong" just because they don't feel the same way, or even if they feel personally attacked by it. Because the attack is not personal, even though it may feel that way.
Does that make sense?
What you say makes a lot of sense. I'm very concerned that in order to right the many abuses suffered by Autistic people, the language might get cleaned up, yet the emotional situations might be sent underground if parents aren't allowed to examine what their rage and hatred toward Autism is actually about.
DeleteOr what their use of the word "hate" is masking.
We can see -- here and elsewhere -- that people are digging in behind their right to "hate" because they feel that they're being shamed. They seem to feel that their humanity, their love for their children, their parenting skills, and their emotional lives are being called onto the carpet. And they're understandably hurt and angry.
But to my eye, that's not what is occurring in Brenda's post -- or in the voices of the Autistic people here.
I think they're asking for the people closest to their struggle to stop using language that is painful, offensive, and endangering to their very humanity. Because as we all know, NT culture hasn't got the first clue about any of this. If the parent community doesn't step in, who in the world will?
Since these are two related communities dealing with the searing pain that comes from unearned and unrecognized NT privilege, it would be awesome to see the parent community and the Autistic community stand together and state unequivocally that hate speech is NOT okay -- that it's dehumanizing, and that it contributes to violence against neurodiverse (and often health-challenged) people who deserve respect and understanding first and foremost.
If Autistic people say that hate speech about Autism is an offense against their humanity, then BAM -- that speech should go the way of any hate speech. Good riddance. Holding on to it -- once you know that it is an offense -- does no good at all, for anyone.
The issue about the pain parents feel is a separate issue, and can be dealt with in separate venues. Especially since hatred is probably the wrong word anyhow, because it doesn't adequately convey what parents are actually feeling.
"Since these are two related communities dealing with the searing pain that comes from unearned and unrecognized NT privilege, it would be awesome to see the parent community and the Autistic community stand together and state unequivocally that hate speech is NOT okay -- that it's dehumanizing, and that it contributes to violence against neurodiverse (and often health-challenged) people who deserve respect and understanding first and foremost. "
DeleteWow! I love how you explain your ideas and feelings, Karla. This conversation between you and Jillsmo has given me MUCH to think about. I am torn here with this debate. I have said "I hate autism" before, especially to my husband. What I mean, most of the time is that I hate that my son has to struggle so much. Which I guess really means that I hate that this world is so unaccommodating to neurodivergent individuals.
I really want to be like your mom, Karla. I want to be my son's safe harbor, the person who fights for his rights and how does everything in her power to help him in any way he needs. I am really trying.
When Danny was first diagnosed, I was so angry with God. I blamed him for giving my son this "disorder" which I assumed was going to ruin his life. As time wore on, I realized nothing had changed about my terrific, amazing son. He was still Danny. And I have let go of most of the anger. Now, I think I need to really work on the way I speak about autism. Thanks for giving me some things to really ponder, Brenda, Karla, Jillsmo and everyone else who has written in.
Brenda, I don't always agree with everything you post, but I agree with this.
ReplyDeleteI'm struggling with what to comment here. Because on the one hand, this makes sense. Like Jill said, all kids need this kind of acceptance and respect.
ReplyDeleteBut I don't think it is okay to tell someone that they shouldn't feel something, because they *are* feeling it. So telling them that they shouldn't hate autism, when they do, just makes things worse.
Autism is not the same as being gay, and for me this discussion isn't even about neurodiversity or difference or acceptance. It isn't about wishing my son would be more like other kids. I don't care about that any more. But it is about function, and safety, and the fact that my son cannot say a single word, has trouble communicating even with pictures or signs, and hits me all the time. I hate all of those things, all of which are, like it or not, caused by autism.
I always say: "I hate the autism as just as much as I love my son. Which is a lot."
ReplyDeleteAnd I've always thought it was "Autism AWARENESS Month" and not acceptance?....
ReplyDeleteThat should change, now shouldn't it? Anyone who isn't 'aware' is living under a rock.
DeleteThe sad truth is that many, many people still know nothing about autism. When you are on the inside, you would think that everyone else should know. They don't. The NT world largely lives in their own ignorance and they have no motivation to find out about it because it does not touch their life in any perceptible (to them) way. Most people I meet know NOTHING about it or make a comment minimizing it, blaming me as a parent for not raising my child right, or suffer any number of ridiculous stereotypes about it.
DeleteTry being autistic.
DeleteEveryone is "aware" of autism. What they know is absolute bollocks, but they know the word.
Awareness is designed to create a sense of urgency. Acceptance is designed to create a sense of community.
"Acceptance is designed to create a sense of community." Beautiful!
DeleteWhat many of the parents have proven in these comments, is that so many of us still lack a basic awareness of autism, as we continue to flounder and lash out and use up our valuable energies hating it. We stagnate in a place of resentment and bitterness.
ReplyDeleteIf you read the comments from the beginning, it is heartbreaking. Because it looks like this:
Autism parent: I hate autism but I love my child.
Autistic person: When you say that it hurts me.
Next Autism parent (completely ignoring what an autistic person has just said to them): I can love my child and hate their autism, it's ok for me to say that.
Next Autistic person: When my parents loved me and hated my autism, I still felt the hate. Please stop saying you hate autism.
Next Autism parent (completely ignoring what an autistic person has just said): I refuse to stop saying I hate Autism, I am right and you are wrong and no one can ever tell me different.
This one comment stream sums up the entire state of the dialogue between autism parents and self-advocates. Parents advocate for children, while simultaneously spitting in the face of the grown-up versions of those same kids. Does anyone else see the painful irony in this? Parents spending their whole lives trying to get their kids to communicate, while simultaneously and willfully ignoring the words of autistic people who are reaching out and trying to tell them something. Something so important.
For me it is simple: are you part of the problem, or part of the solution? If you say you hate autism, you are part of the problem. No ifs ands or buts. Your good intentions are nullified the moment you spread that feeling of hatred to the world, because the world will gladly take it. And they will use it AGAINST YOUR KIDS.
By all means, name your feelings. Tell the truth. But the truth about your feelings is not that you hate autism. It's that when you can't understand your child, you hate feeling powerless. When your child is frustrated or angry, you hate seeing them struggle. When your child is developmentally delayed, you hate feeling like they are missing out on things. And to be brutally honest - you mostly hate the feeling that YOU are missing out on things.
But those feelings are yours. And they are not unlike the feelings of any typical parent of any typical child. They are the feelings that come along with parenting - not just parenting a child on the spectrum. Sure, our feelings may be deeper or bigger or more overwhelming, but they are nevertheless OUR feelings. Own them, don't blame them on your child's neurology. I have friends with kids who are "SO low functioning" as one commenter described, and they adore their children and embrace their autism, and they all work together to live a life of wonder and beauty and togetherness. And it's not all butterflies and flowers, but it's a hell of a lot better place to live than the land of hating autism. They are not rich, except for being rich in the gift of perspective. If you cannot achieve a life like that, if you cannot love your child without adding a "but" after it for "hating autism" - have the courage to blame yourself, not autism.
Brenda, it's been a year since I wrote on my blog, after I had to return to work full-time. But I think you would enjoy the last post I wrote, which was for Autism Awareness/Acceptance day 2011: It's titled "On My Love Affair with Autism" http://www.welcome-to-normal.com/
I loved it then, as I love it now.
What I'm afraid of is that too many parents *do* hate autism. A lot really don't, but they're inarticulate about expressing the more complicated feelings you describe.
DeleteBut some actually do. And parents, if you think that your hate doesn't come through loud and clear to your kids, think again.
And thanks Caitlin for this response.
I think you are right Chavisory - some parents are indeed feeling the emotion of hatred toward autism - but it's a vicious cycle that's creating that feeling of hatred in the first place. The language and lens of hatred permeated the autism discourse and perspectives on autism when their child was diagnosed, and so they internalize that language and that perspective, and it manifests as real hatred.
DeleteThey become locked in that perspective, and they fail to see any other way to view autism's challenges. They create an artificial division between loving autism's gifts (their wonderfully unique child) and hating autism's challenges (sensory and communication issues) - but it is just an imaginary line. You cannot separate the gifts and challenges of autism, any more that I could split my son down the middle and still call him whole.
Caitlin Wray wrote, "... Next Autism parent (completely ignoring what an autistic person has just said)..."
DeleteYou have completely and totally hit the nail squarely on the head with your post. This attitude of ignoring the voices of autistic self-advocates is continuing even after you, and others, have pointed it out. Shame on these 'Autism parents' for ignoring the voices of the very people with the most insight into the world of Autism, autistic people! How rude! They don't understand how much they are hurting us and talking to them is like pounding your head on a brick wall. It only feels good when you stop!
Autistic people are people who deserve respect.
Parents, don't EVER talk about a non-speaking person as if they don't understand what is happening around them. Many non-speaking autistic people have found their voice via computer or iPad and proven that they DO understand the world around them even though they can't speak. Never give up hope. Always treat these autistic individuals as intellectually capable!
Very well said. I'm a parent, but reading through these comments has been making me really uncomfortable.
DeleteI have been ignored and even called names. Even when I tied to be polite and even sympathetic to the parent. No more! It is hurtful and thank you for pointing out that we are being ignored.
DeleteThis post was really quite powerful, Brenda. I can honestly say that I never want my child to believe that because I hate how something hurts him, that I would ever hate any part of him. But I can see how as he grows older, he would come to the conclusion that because what is frustrating him, his inability to communicate or his sensory deficits, in my mind "hurt" him, he could think I did not love a part of him.
ReplyDeleteFor what it's worth, I think "hate" is a word I shall shelve. I want my son to know I love every part of him and will do absolutely every thing I can to make the world around him accept him as he is. I don't need the word "hate" to express my world. It is not as important as showing my son acceptance.
For what it's worth - you hit a home run with me today. Thank you.
"I don't need the word "hate" to express my world. It is not as important as showing my son acceptance."
DeleteThis one statement is the heart of the issue. This decision takes wisdom and selflessness. And this is what will change the world for our kids.
I am with Caitlin on devoutly wishing that more parents on this thread would respond directly to the autistic adults here, who can speak from harsh experience about the impact of using the language of hatred. Autism acceptance means precisely nothing if our voices aren't taken seriously in this conversation. Without that dialogue, acceptance simply remains a feeling, not an action --- and action is everything when it comes to the quality of people's lives.
ReplyDeleteSomething that I think every parent needs to do before they think they have the right to say "I hate autism" is ask their child if they hate HAVING autism. After all, it's not happening to you. It is happening to your child. They are the only one who has a right to say whether or not they feel burdened by autism. And contributing to the idea that autism itself is inherently evil and damaging can contribute to the world seeing people who have autism as being broken or subhuman. And that is very, very dangerous.
ReplyDeleteThat's true but don't forget the messages autistic people internalize about hating ourselves and what stop us from being normal, we are all vulnerable to self-hatred.
DeleteI love this post and I am saddened by many of the comments. I am autistic and I am not diseased, but if you can draw any kind of parallel between cancer and autism? Then, I don't know how to bridge that gulf in perception between us. This is how I see it: it is not autism that "causes" your child to be without friends. It is a society that does not teach its children to value diversity, that does not teach children to be kind and to reach out and support those who may need extra help to make a connection. It is not autism that causes your child to self-injure. It is the stress of being in an environment that is a constant, rapid-fire onslaught of stimuli. I had a tough childhood (only partly because of my disability), but I was raised in the 60's. My heart breaks for autistic kids today. The modern world is so disabling to those with our neurology. There are so many, many sources of noise, for one thing. I believe that there are many benefits to the sensitive and intense way in which we experience the world--and there's soooo much beauty in it. But the downside is that the busy, shifting, fast, loud, and bright world can *hurt*. But why blame autism, why hate autism? If you, a neurotypical parent, were suddenly thrust into a world where everything was 50 times louder, 50 times brighter, where people spoke a different language and it was difficult to communicate, where you might be abruptly dragged to one place or another, or unpleasant things would happen without warning, then you might well implode too. Would you then hate yourself? Would you hate your...otherness? Whatever it was that made the world excruciating for you but not for the other denizens of that world? That would not be fair, or helpful, or productive. I don't think it would be fair or helpful to hate the inhospitable world either. The best use of energy would be to look for the best ways to help you move through the fast, loud, bright world in comfort and health and with self-respect intact. Seriously, where does "hating" anything enter into it and how does it help?
ReplyDeleteRina, you beautifully articulated this. You cannot value and advocate for diversity, and then hate the very thing that creates that diversity. We simply can't have it both ways. If we want people to respect our autistic kids (and keep respecting them when they grow into adults) then we ourselves MUST respect autism.
DeleteRina, your comment really hit home. You are so right. The struggles my son faces everyday are not because of autism, but are because his teacher refuses to honor his differences in learning. This is just perfectly said. Thank you!
DeleteWonderful post, mostly sad comments. In a society that hate us even parents defend their rights to hate us. Every single person that said that -"My child is not Autism so I can hate Autism." didnt even read what we wrote. I haven't met a person with a disability that don't know about being taught to hate themselves because of the thing people do and say with good intentions.
ReplyDeleteI think autism is a deep and intrinsic part of me but that doesn't matter because I feel hurt when my parents say they hate any aspect of me, including painful ones like the fact I have PTSD, it's not a part of me like Autism is but I don't want any part of me dealing with hatred from people I love, I'm tired of being hated.
It's okay to have bad feelings and ask for help with them but that's your problem and not something your child or autism is doing and it's not okay to defend your right to have a feeling of hatred that will deeply harm your children and every autistic and disabled person.
To say we love you but we hate this part of you doesn't work.
So I just asked my kid if he hates having autism. He said, "No. Why would I? It gives me super powers." I asked him what he hated. He said, "Nothing. You told me not to hate anything, that hate was an ugly word." So I asked him what he didn't like. He said, "loud noises, buttons, shoes with shoelaces and tags in my clothes."
ReplyDeleteHe's eleven. Very wise indeed.
And more and more companies are making clothing without tags. :)
DeleteGood point. I feel like the therapies and interventions are necessary not to fix autism, but to bridge the gap between the NT majority and autistic minority. If the majority learns a certain way, interventions are necessary to integrate the atypical learner. Therapies are also necessary for those who are incapable of independence or self care. Funds should be spent just to understand autism. Perhaps a cure isn't needed if we merely understood the enigma that is autism.
DeleteSometimes I wonder if autism is the next step in our evolution... Some individuals experience life so intensely and are so brilliant, maybe us NT folks are the ones that need to catch up.
I dont know... Good points though.
My son has mild autism. My brother has severe autism. I watched him hurt himself and attack family members. I watched his frustration with not being able to communicate. All I can think about this is, I have never hated autism. It has just made me very, very sad at times.
ReplyDeleteI love my Daughter completely. I hate autism absolutely. It is not about how her autism affects me...it is about how she is affected. Every progress/regress, success/failure...I love her. I do whatever I can because I am her father. I celebrate every moment with her...and I hate autism.
ReplyDeleteWhat if your daughter conceives of autism as part of herself?
DeleteMaybe she doesn't right now, and maybe she can't express it, but maybe she will one day.
Then how will you explain to her that you loved her completely but hated her autism absolutely? Because you can't. You WILL have hated part of her. You will NOT have loved her completely.
Risk you're okay with taking? With her self-worth on the line like that?
"I love my Daughter completely. I hate autism absolutely. It is not about how her autism affects me...it is about how she is affected."
DeleteI feel like you skipped my comment above, and perhaps those of the other autistic adults who have commented here. It is not her autism that is affecting your daughter negatively--it is a society and world which is inhospitable to someone with an autistic brain. I am not just splitting hairs here. This is the crucial distinction that I am trying to make. Also, I believe that you love your daughter and only want what's best for her and will make her most happy and comfortable--but how can you be so sure that you know how your daughter's autism is really affecting her, and what her experience of being autistic is really like? Regardless, you cannot tell someone, "I love you but hate an essential part of you," and expect that person to feel loved.
I am not addressing the issue(s) with society, ignorance, intolerance, etc. I am simply speaking to my immediate relationship with my daughter and her autism. It is not an "essential" nor integral part of her identity. To state, "you WILL have hated part of her. You will NOT have loved her completely", is pompous bullshit. I know my daughter...I am mature enough to closet my negative reactions about 'autism' so that she is not witness. Her autism is profound...she is disabled. We work exhaustively to enable her and will do so until our last breath. To say that autism does not negatively affect her, rather it is society that negatively affects her...(paraphrasing here), is absurd. Society is secondary...(I too, deal with societal ignorance daily, as do all of you)...autism and all that it takes from my daughter, came first. Do not tell me that it (autism) is not negatively affecting her...it is disabling...debilitating. I simply do not care what society thinks...my daughter cannot dress herself, comprehend language, communicate basic needs, recognize danger. She is a profound beauty, but the wall between us is autism. I love her completely...I hate autism absolutely. I am able to separate the two. My daughter is seven...she is an enigma. I would never claim to understand/know her experience. I just want to make her laugh as often as possible. After seven years...I DO know who she is, despite autism.
DeleteYOU are able to separate your daughter from her autism, but the point is that your daughter is not able to. Thus, she will feel the hate embedded in the love, and because of that she will never feel "loved absolutely". Take down your wall of indignance, and listen to the autistic people who are reaching out to you.
DeleteDo you think that I stomp around the house with my hate-filled fist raised high, shouting curses to autism!? Our daughter receives unconditional love and encouragement. Negativity is not permitted in our home. Having autism or sharing the life and love of someone affected, does not permit nor entiltle you to make a sweeping generalization. You do not get to point a presumptive finger and submit an analysis of my family dynamic. This is not a thread of discussion...it is a dialogue of arrogance and accusation. All my daughter feels or experiences from us ( as well as her family), is love...and I take offense. My mistake for reacting and responding.
Delete"I am mature enough to closet my negative reactions about 'autism' so that she is not witness."
DeleteI promise you, she can feel it. Autistics are VERY sensitive to how people around them are feeling, even if you aren't aware of this, and even if they themselves aren't consciously aware of it.
I LOVE THIS! Thank you so much for writing this. Thank you thank you thank you!
ReplyDeleteIt is so sad to see autistic adults expressing how this 'hate autism' attitude HURT them when it was done to them as kids, only to be ignored by the parents who want to defend it. How can these 'haters' be so rude? How can they continue to treat the autistic adults as if they aren't saying anything worth listening to? Why are they treating the autistic adults as if they are invisible and don't have a valid point? This only proves the point of the article even more and these 'hate autism' parents can't even see that they are doing it. They continue to spread the hate (hurt) and make it worse...
ReplyDeleteWho is lacking in empathy here? The haters. They assert their right to free speech even though they are hurting autistic people by vilifying autism. You may have free speech but you also have responsibility for your choice of words. You don't have the right to yell fire in a crowded theater. You don't have the right to damage others by the irresponsible negative exercise of your freedoms. You are responsible for the negative world that you help create by spreading your hate message. You are hurting me and my son. We are both autistic and we need acceptance - not hate.
To the haters of Autism --
ReplyDeleteMy son and I are both autistic. We don't want to be put in a place of hatred and open hostility toward autism. It hurts us to be in such a hostile world. I am working for more than autism awareness. I want to see autism acceptance. I want to be accepted as I am. I don't want to be told that I am defective and therefore of lesser value as a human than a 'normal' person.
Don't you see that spreading hate around is messy and it gets splashed into places that it wasn't intended to go? If it is ok to openly declare hatred for autism, it is going to cause more shunning, isolation and bullying by others who see this attitude and use it against people like me, people like my son, and people like your own children. Think about what you are doing when you publicly declare hatred for autism. It hurts -- even if you don't intend to cause hurt -- you do hurt all of us!
We have autism. It is how our brains are wired. It is NOT a disease that can be removed from us. It is a permanent part of us. Please accept us as we are. We were born this way.
Thank you for this post. Off to share with anyone who will listen.
ReplyDeleteDear community,
ReplyDeleteAs a parent of neurotypical children, I have found your comments to Brenda's post very thought-provoking and enlightening. I admire you all for your eloquence and bravery in stating your thoughts. Now I have a question for you:
As you all are probably aware, yesterday CDC released it most recent estimates of autism prevalence in the US. The data are limited in many ways, but they do make clear that more and more children are receiving a diagnosis of autism. A portion of that increase can be due to better awareness and thus more diagnoses, but it seems that a significant proportion of the increase is occurring because there is an actual increase in the incidence of autism (which is different that the diagnoses of autism).
As many commenters on this blog clearly noted, autism should not be considered a disability or a liability or something to hate. I respect those comments and thank the commenters for their candor. But I don't know what's next. As a scientist, how, then, should I frame this increase in autism? If we frame it as "we must do more research to find out why more US children are developing autism," then that seems to imply that having autism is a bad thing, which clearly many commenters on this blog do not believe. However, it is undeniably a bad thing to spend thousands of dollars on therapies, financially plan for a child's future if s/he may not be able to provide for him or herself after the parents are gone (I recognize that many people with autism do become educated and employed, but I also recognize that many do not), and perhaps put one's life on hold to meet the needs of a child with autism. Working within that framework, it seems that we should figure out what is causing the increase in autism and work to prevent it. But, like I said, that seems insulting to those who do have autism.
How can we talk about this without insulting anyone? Is it possible? I truly want to know your thoughts. Help me understand!
thank you,
Amy
Your question is the issue afterall isn't it? Those who are able to express themselves can tell everyone what they want. However, the majority of those with autism do not have that luxury. The scientific community needs to understand this dramatic increase in autism rates. They need to understand what is causing this. They also need to find a way to help those who are severely affected so that they can have the human right of choice in their lives.
DeleteMy children have would not want to change who they are. They have made that abundantly clear, but they are able to make that choice. (Not bad for a parent who hates autism..huh. I guess I guess my feeling didn't effect their self-esteem in the negative did it?)Everyone with autism should have that right.
Amy,
DeleteI love your thoughtful question. Having read every response to this post and knowing the community as I do, I think it will be very hard to please us all. We all see things through our own eyes.
Some think Autism can be "cured" while others think that ABA is the only way to get improvements while others chase the latest diet. And all will stand behind their views to the max. So, in short, you will hurt someone's feelings no matter what.
We all do have one common thread that we agree on - we want this to be better for the children, gone from the lives of our children's children, understood and accepted NOW. We want the services they need to become the highest functioning person they can be.
Keep doing what needs to be done and don't worry about hurt feelings.
Oh, and one more thing we would like is that they (medical and insurance and governmental types) not try to change our services by changing the words used to describe our kids. Changing their labels, doesn't change their issues.
the study is of rates in children. what is it compared to when you say there is an increase in autism and not just an increase in diagnoses? i don't think you can get a reliable comparison for adults until this newly-diagnosed generation has matured. those of us born prior to the 80s have been forced to cope, so there's no longer a reliable way to count our numbers.
Deletesince awareness has increased dramatically in recent years, isn't the best course of action to wait and watch the numbers over a longer period, instead of allowing 'autism speaks' to get us all worked up over what is possibly a false alarm?
Bad Tim: The number of autism diagnoses has increased so dramatically that CDC is saying that not all of the increase is due to more awareness and therefore, more diagnoses.
DeleteTlchimes: Thanks for the thoughtful response. You said what I needed to hear, "we want this to be better for the children, gone from the lives of our children's childrens, understood and accepted now."
So, it is safe to say that we should continue to work to prevent autism, by finding out why it occurs, while researching and providing therapies and services for those who are in need of them now. Good message.
We can all agree that we want autism "gone from the lives of our children's children"?
DeleteNo, we cannot! Plenty of people don't want to see autistic people wiped off the face of the earth, especially autistic people. We love our community. We don't hate diversity so much that we want to eliminate a group of people just for having a disability.
I have tried responding and not responding to many of the posts here. I believe everyone is entitled to their opinion, whether I agree with it or not(I simply consider you unenlightened if you don't agree with me ;) )
ReplyDeleteI am sitting here looking at my 3 kids and impatiently awaiting on my 4th in a few weeks.
My oldest son(7) has severe high functioning autism, my middle child (4), a daughter, will more than likely be diagnosed with aspergers when she is older. My youngest son (2) showed some worrying signs when he was very young (poor eye contact, fascination with lights and fans, poor attachment, fear of movement etc) we have done some very early sensory integration and are now taking a wait and see approach.
We went into our final pregnancy with the full knowledge that she will probably also be on the spectrum.
This does not fill us with fear, anger, hatred or worry. I am excited about the future for our children. I have seen my son go from non-verbal, sensory seeking, continually stimming baby (he was obviously autistic from about 6 months) to an independent, well mannered, well behaved young boy.
I love all my children, without reservation. I love the autism/aspergers, I love the ups and the downs. I would not remove the autism from any of my children, I embrace it.
My oldest is amazing, his attention to detail, understanding of patterns, his memory and retention of knowledge, his sense of humor, the joy he sees in life surprise and fascinate me every day.
My daughters strong sense of conviction, her memory, the way she talks to you (like a woman beyond her years), the way she can fill a room with her presence, her need to know everything. Her sense of order and logic push me to be a more open minded and tolerant person, to question life and be more honest.
My youngest is like the light that fills a room. his quiet patience with his brother and sister continually amaze me, the joy he has just by playing next to me surprises me.
I am not deluded, I know there are dark days, when I know why people drink. I've had neighbors knock on my door to see if everything is ok during a melt down. I've had police knock on the door due to the amount of screaming. I've been bitten, kicked, trampled, yelled at, threatened and abused. I still wouldn't remove the autism from my kids. Every deep low has an equally liberating high.
Autism is so intrinsically part of who my kids are and the life they would lead.
Is it not a matter of perspective? When I look at a child and think "hmmm, they're on the spectrum" it is not an insult, nor do I feel pity for them. I see the amazing life they could lead, the gifts that ASD could give them, the possible adult they could become.
Posted this in a comment thread and will post it here and everywhere else this discussion arises until the point sticks: The bottom line here is that the First Persons in this situation--the autistic people from all parts of the spectrum--have overwhelmingly expressed how painful it is for them when people say, "I hate autism." It is incumbent on any of us--ANY of us--to listen to that and work to understand its deep implications and to avoid causing that pain. Period. Any other effort to argue against listening to the First Persons here and to contort a rationale into some framework to make you feel better is simply intellectually dishonest.
ReplyDeleteYes, Emily! This is a very important point! Thank you for making it.
DeleteThank you Emily!
DeleteWithout reading the sea of the notes and comments above, I would just to pop in to the topic. For us, autism is an intrinsic part of who Joey is. There is no "I love Joey and I hate autism" because without one, there is not the other. There is no separating the two. Joey non-autistic would not be Joey- he would be an entirely different person.
ReplyDeleteI do not know that person.
I do know Joey. And I love Joey.
Do I hate his struggles, the toll autism takes on our family? All people have struggles. All families have issues. Yes, I sometimes think about things we could do if Joey was not autistic, and activities we miss or avoid because of the issues autism causes, the challenges it presents- and most of all, the obstacles of prejudice and ignorance that society creates which keeps us from certain kinds of activities. ON the other hand, there are opportunities we have that other families do not have. There is understanding in our family of each other, ourselves, and others that we would not have otherwise.
No, I don't hate them. Challenges are something to be faced, understood, overcome, and met head-on; but they also make us stronger, give us skills and understanding, and force us away from the beaten path. There is value in being challenged, and value in those who can meet a challenge without hating anything. Being angry? Feeling upset, worried, stressed, concerned? Wishing there was an easier way? Yes. But hate?
Hate is caused by ignorance, and ignorance alone, without exception. If we are feeling this towards something that is intrinsic to a person, that may human nature; but it is also a red flag that there is much that needs to be done- that it is time to do more research, reach more understanding, and take a breath. You've forgotten something very important: these are our children. They are gifts, and we should enjoy every precious minute.
Even the ones that make us want to run screaming into the night. Yep. When you feel one of those, its time to stop, breathe deeply, and hug and kiss your child (or, if they are touch-aversive, tell them how much you love them!)
Just to throw my 2 cents into the ring here...
ReplyDeleteI don't "hate" autism; I do "hate" watching my son bang his head because I am afraid he is going to hurt himself. I would "hate" this behavior if it was due to autism or not (I also "hate" my NT daughter hitting walls when she's tantruming, for instance)
But looking at it those points I "hate" would be better described as frustration or points of bewilderment and having no idea what to do now.
In the end I could never "hate" autism, it is a deeply-seated part of my son. It is a part that causes me great pain and frustration when I see the things he can not do. But, it is also the part that makes me laugh so hard I cry and my stomach hurts. It's the part that allows me to get to enjoy music and dancing on such a deep level with him and it is always the part that makes me realize how truly precious every hug and kiss I get from his.
Thank you for writing this Brenda, (I came via a link by Sunday) I am off to explore your little corner of the internet some more. :D
This is an absolutely amazing post! By far, the most poignant examination of this issue that I have heard or read. Unfortunately, I've heard the "I hate autism" statement from plenty of parents that I've worked with.
ReplyDelete"The child psychologist who thought she had all the answers to parenting until she became one herself." www.themommypsychologist.com
Brenda,
ReplyDeleteI just thought you might want to check out the post where I mention you as one of the experts. The parents are the real experts when it comes to living with autism. Check it out, it will make you smile.
http://www.themommypsychologist.com/2012/04/02/april-is-national-autism-awareness-month/
Watching all these indignant parents of autistic children insist that they aren't hurting their child by openly hating part of them, even when faced with autistic adults telling them that it does hurt, makes me a little queasy. I work in a group home with severely autistic non-verbal adults, and believe you me, they KNOW how you feel about them. All you have to do is learn to listen to see that. If I had an attitude of hating even part of who these guys are, that would reflect in how I interact with them, and I would see them pull away from me. I've watched it happen to other staff members who are fearful or angry.
ReplyDeleteAutism is not cancer. It is not a problem to be solved. It is an intrinsic, interesting, different pattern of brain wiring. The cancer here is the way people treat individuals with autistic brains.
Brenda,
ReplyDeleteGreat post. I believe doing everything you can to help your child, on or off the spectrum. Raising kids to have good self-esteem is so important, and necessary to raising confident kids, and if they are forever hearing about how bad the autism is or how they need to do this and that to get better, it can't be good for their psyche. Now in saying that, I understand that many parents have children with regressive type autism and are so sadly missing the child they had, and "autism" took them away have it. However I caution parents when I'm discussing self esteem and raising children/teens that the way to address "treating" autism - is to clarify what you are hoping to help - ie if you are treating gut / poop issues , you tell your child you are trying to get rid of his stomach issues, help him with his health.
Or in my case with Jeremy and all his sensory / motor stuff - I tell him I am trying to help him to be able to move his body better or handle being in crowded places - I'm not treating his autism. And now that he is a young adult he makes decisions on what he wants to work on to be more independent since he has such a hard time with motor issues.
In some ways it may just seem to be a case of semantics, but children are very sensitive.
Make sense?
Chantal Sicile-Kira
Yes, exactly... My three year old asked me last week what autism was... For us, it's a stomach gut thing and I addressed it such... I told him how wonderful he was, how much I love, love, love him, and that he has stomach pain that causes him trouble and that is why we see the doctors and take the vitamins. He is so wonderful... I make sure he know this. Yet for us, at three, his medical issues are very much a part of his neurology. I love the framing of this as this where I support you because you may have difficulty but this is where you shine. Thanks Chantal.
DeleteOh my goodness, Yes! YES! You Are Sooooo Right! This is an incredible article and I am so happy I found your blog. My son are Aspies and my husband is probably an Aspie too, and what you are saying is so true. You cannot hate any part of a person without hating them. I love how you wrote this article. It's wonderful.
ReplyDeleteBrightest blessings dto you,
Bird
http://takealeftatthemoon.blogspot.com/
I meant to say my son and I are Aspies. ;)
ReplyDelete"I hate autism" is hate speech against autistic people.
ReplyDeleteAbsolutely WONDERFUL article, Brenda. You have nailed exactly how I feel about myself and my son (we both have aspergers). This is great. I've posted it on my facebook page (Parenting with Asperger's Syndrome) and my personal page.
ReplyDeleteBeautiful. Keep it up!
Too many comments here are focusing on the lack of 'hate' as a requirement to do the opposite - to 'love' autism and all it's challenges.
ReplyDeleteThat is missing the point entirely.
To put it in perspective: "Acceptance is a person's assent to the reality of a situation, recognizing a process or condition (often a negative or uncomfortable situation) without attempting to change it, protest, or exit. The concept is close in meaning to 'acquiescence', derived from the Latin 'acquiēscere' (to find rest in)."
In other words - learn to work with and live with the hand you have been dealt and find your way to remove the negative feelings. What is - is. All the hate in the world won't change it. Hate has a nasty habit of perpetuating itself as well. If it is ok for you, the parent, to hate autism then it must be okay for the teacher to hate autism, the pastor, the clerk at the grocery store.
It may be sappy but be the change you wish to see in the world. Acceptance of autism will not happen until those with autism can accept themselves as they are and their caregivers can make peace with autism and help their loved ones reach that goal. As a parent you are extremely powerful and influential. You don't have to love autism in order to accept it for what it is and what it means in your life.
As one on the spectrum, I suppose I have a personal interest in this conversation.
ReplyDeleteI want to know why there is this fixation on "what my child is missing" or "what my family is missing".
There is an automatic assumption that not fully participating in the arbitrary cultural norms of our present rapid paced technological society is BAD. There is an automatic asumption that if I don't particpate in play dates, little league, Prom, frat parties, flash mobs, gossip, binge drinking, safe sex, driving, award ceremonies, living large and all the other expected 'normal' parts of life that I am never going to be happy.
How much of this is YOU projecting what would make YOU happy on me?
What is wrong with me reading a book on some esoteric part of Amazonian Indigenous People and their interactions with rain forest? Because this won't get me a spouse, a home in the suburbs, three cars and social standing?
What's wrong with me being a low paid worker in some off the beaten path bookstore that gives me access to Amazonian literature if I am self sufficient and HAPPY?
If you insist on making me like you, if you define failure as anything other then YOUR concepts of socialization and success, then you will NEVER put aside your preconceived notions of what is human and learn to love ME.
I may have terrible eye contact, but I know when you are not enthralled with me and I perceive when you wish that I was something different then what I am. And it hurts me.
Instead of asking "what is my child missing", ask yourself "what am I missing by not first excepting everything about my child". Then you can build a connection that allows you feel the love that your child so desperately wants to return to you but cannot because you insist that the expression of that love must conform to YOUR standards.
I get both sides to this. As an autistic adult and parent I can totally understand the process that causes this divide.
ReplyDeleteI was diagnosed late in life. The DX answered so many things about my life's struggles. It also freaked me out. For months on end I sought and wished for a cure. I HATED autism and wanted to be rid of it.
I was angry for a very long while and the whole while I was angry this desire lived in me. But as I began to examine my life with Autism, I then tried to imagine it parsed from me and who I am and never could I do this in all those months. Eventually, I made peace with the DX and with the compromises I would have to make in order to be a healthy autistic person.
And with this letting go of a cure and the hate of autism, also came a very healthy acceptance of me as an autistic person. And only with that milestone could I again love myself for true love can only follow complete acceptance.
Those parents who still hate autism have simply not yet accepted their child as an autistic person just as I had not accepted me as an autistic person. And while you still love your child, it is literally impossible to love them wholy until you accept them wholy as an autistic child. (what they are as a person)
Keep reading, keep learning and keep supporting your child.. . Keep your eyes and mind open. The acceptance part is waiting for you and so is your child.
I couldn't agree more! I wish more parents would "get this". Everyone tells me how "confident" my son is, although he still has speech delays at the age of 11. The fact is that once we realized what his "difference was", we continuously looked for the positives and NOT the negatives. Yes, we understand he gets overwhelmed with sensory issues, so we have taught him to deal with those issues. But we talk about autism and all the great things he can do because of it, instead of making autism be some horrendous disability that makes him feel ashamed. Yes, of course he has speech delays and other issues, but he also has a photographic memory, perfect pitch and never judges others, is sweet to every small child he meets, to every adult, etc...You cannot possibly truly help an autistic child and prepare him for life by having the attitude that what he has is something "to be hated or wrong".
ReplyDeleteI disagree. Imagine that you have a child and you love and accept him and then at 19 months something happens and he slowly begins to recede from you, close in on himself, lose himself... Regressive autism is not the same... Not born with... It's a problem to fight against... Not to fight the child but to get him back... And as I get him back, if he is different, I will love him all the same, but I do not love the RNA damage, the stomach and brain dysfunction that takes him away from me.
ReplyDeleteSomeone said, "And Rewiring someone's brain on that level means you utterly change who a person is. I repeat: it changes who a person is to remove the Neurology of Autism. "
That's not true when the brain is still developing from 18 - 5 years ols. My son is not complete and I will fight like mad to stop the dysfunction that UC MIND and UCSD has documented as occurring. This is currently called autism... As they understand more and more about the toxic and degenerate dysfunction that happens during regressive autism they are stopping that autism neurology from happening. And I am so glad.
lets face it. we discriminate against autistic people because they are a burden to society, why drag up a lame wolf, its no use to the pack.
ReplyDeleteand savants are in the vast vast vast minority. Love your child all you want, but we need to get autistic children out of mainstream schools.
People who hate autism, this is the kind of discriminatory thinking that you're encouraging. If you don't like people talking about your kids as "lame wolves" who should be excluded from society, you may want to rethink your attachment to hating their disability.
Deletety for airing this Brenda, as an Autistic adult with 2 young adult Autistic nephews this is what I have been saying all along, but because I am Autistic, I often but heads with parents etc who feel this way and often try to walk all over me and control me like they do there kids. Autism is a part of us through the good,bad and ugly, I am who I am for a reason...those who hate Autism hate us,and we Autistics are here to stay whether people like it or not,we have been here since the dawn of time as well in one way or another and we are not a plague or epidemic as Autism haters call us. thank you and I am on facebook as that is were I run my groups..Autistic children grow up to be Autistic adults you have a lot to learn from us..cheers..
ReplyDeleteI love my son with who is misdiagnosed with autism. I hate the pain of mitochondrial disease that robs him of proper neurological function. I hate the 12-20 times a day bowel movements, the clostridia, parasite and bacteria laded bright yellow diarrhea. I hate the central nervous system damage provoked by chronic auto immune insult. I hate that he spends all his vacations in hospitals reversing the damage caused by vaccine encephalopathy. These very real, very painful medical conditions I hate. My son? I love. Respectfully, LJ
ReplyDeleteHating autism is a positive approach. That's the motivation to cure the damage and give our children their lives back. Autistic kids don't enjoy biting themselves into bloody messes and bashing their heads through walls. They do enjoy each small step they take that brings them closer to normal and further from the abject horror of being severely autistic. I hate the fact that any child has to endure the horror autism. It can all be avoided with some honesty.
ReplyDeleteAutism is a serious Neurodevelopmental disorder often times resulting in seizures, severe self injurious behavior, isolation due to behaviors, other behaviors such as feces smearing, head banging, spitting, dangerous bolting and so on. Parents love their children but don't love the autism. Any parent who would love these things affecting their children day in and day out are questionable parents.
ReplyDeleteI note that the people who preach--if you love the child you have to love the autism-- are parents of kids with very high functioning children (not as hard, sorry) or supposed Asperger adults on here typing and expressing their feelings as well as a typical person. You have NO CLUE what it is like to live day in and day out with severe autism.
Shame on me for having politically incorrect emotions while my son hides behind a label that seems to make it ok for him to break almost every rule of society with impunity....
ReplyDeleteSure ok, I'll just accept all the violence and filth he spewes at me because he has a label. But if he were a man I was married to and he treated me this way NO ONE would say I was wrong for feeling hatered.
Sometimes love becomes conditional.
I really don't think it is wrong to feel hatred - but I think it is wrong to show your innocent and dependent child hatred. If a love of a parent to a child is conditional, then this is a problem and not ideal for the child. The parenting would need a change in that case. Whether it is normal, natural or whatever - it still isn't the best environment for a child to exist within.
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ReplyDeleteWonderful! I feel that the world is sadly backward when it comes to autism. Totally agree with you that the logic is flawed when people say they hate the autism but not other things. The issue is in that they see the autism as undesirable. Other things are also hard, but you don't hear people saying everything that is hard is hateful or a nuisance. Autism is part and parcel of a person, so that needs to be embraced and not "tolerated". I think a lot of this idea has been misunderstood by many commentors, in saying they don't love something that hurts or upsets their child. I really don't think that is the point - I think the point is, it needs to be considered as part of the child and not as some undesirable thing on the outside of the child that can hence be resented. It is intertwined with the child, so it cannot logically be hated if you are going to be parenting your child in a loving, unconditional and optimal way. I think the point here is what would be best for a child.
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ReplyDeleteMy son has just smashed a hole in the wall and knocked a picture off the wall. I think a slow YouTube video set him off. I am cowering in a corner because if it is not the wall it will be me.
ReplyDeleteHe is a kid who once spoke and loved his family. Then he regressed into autism.
Now I think the end game will be him killing me in a spasm of rage that he will later regret. But since he is non-verbal no one will ever know.
Aspie and HFA haven't a clue about what LFA is or what it is like to live with it.
I hate autism alright, my son is just different huh? Neurodiversity you say? Let's all watch him eat and smear his own feces, that's so diverse, and when he bites chunks of his own flesh from his hands and screams for hours every day not able to have a bowel movement or speak a single word or play with a toy that's pretty diverse of him. I'm sure his brother loves that he destroys everything he can get his hands on, his older brother must love locking up everything he owns just to protect it or his brother in some cases, oh he also loves running from him when he has fits of uncontrollable rage and tries to bite chunks of flesh out of us, it's so freaking awesome to some of you isn't it? I just love the feeling of calling 911 and looking all over including the nearby river when my son bolts in an instant or jumps out a window or moving vehicle. It's different of us to lock every cupboard, drawer and door so our diverse child doesn't eat plastic wrap, aluminum foil, cleaning and beauty products among other dangerous items- most are not dangerous to a neurotypical child, but to him they can be deadly. I love the child, but HATE the autism. Autism isn't all high functioning quirkiness to some of us in the real world,it's a terrible nightmare we wish we never were involved in. Now that we are some of us find there's no other choice but to try to cure it. I guess it just depends on how severe it is or how much a parent can sit back while their children try to kill themselves everyday and pretend they are just different and that they love having their autism.
ReplyDeleteBrenda, I love you and I wish there were more parents like you out there. We need your voice. Stay strong.
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