Thursday, April 01, 2010

On Autism Awareness Month…

My older brother is autistic.

His name is Bill.

He’s aphasic, so he doesn’t speak in sentences or all that often…and he’s a charmer, loves to eat sometimes foods all the time and is a master of the barbeque grill (with supervision…lots and lots of supervision).

Growing up with autism in my world has taught me a lot about communication…about the power of sound, the meaning behind high pitched wails or low rumbling laughter.

Autism has taught me the precious value of a hug or a kiss…of eye contact or a quick glance…of a tickle and the giggles it inspires.

I have lived my entire life with autism.

For me and mine, autism is…it just is. Sometimes it’s a pain in the ass and sometimes it is the most amazing thing, but autism is a constant thing not limited to months or years or days when walks take place.

Autism Awareness Month often brings with it a lot of stories about autistic children. I understand why, because so much rides on early diagnosis and therapies and education. But my brother is 39 years old…he’ll be 40 this July (Lawd, have mercy!)…and not enough attention is given to autism after a child with autism becomes an adult with autism.

So, be aware…that my brother’s life isn’t wretched or sad. My sister and I work very hard to make sure that it isn’t.

Bill is not a cure that didn’t happen or a diagnosis…he’s a human being, who gets up every day and goes about his bitness.

Some days are good.

Some days are not so good.

I could say the same about my life.

Be aware…that autistic children will become autistic adults. A body doesn’t grow out of autism. That is not an argument against advocacy for autistic children…but rather a challenge to advocates to extend our work beyond programs for children.

Be aware…that there is a strain on loved ones and that not all of us are parents. I am my brother’s co-guardian and, as such, I often find myself wading through the world of programs and funding…of Medicaid and the Department of Mental Health…of wants versus needs. My sister and I balance our role as sisters with our role as guardians…and we are not the only ones doing it. Families need to plan for a life, not just a childhood…they need support and education on how the system works once a child becomes an adult.

Be aware…that our lives are a different kind of normal.

I grew up knowing that eventually my sister and I would have to take on a guardianship of some sort. I confess that I used to fret about it…I watched my mother become consumed by advocacy and the search for a cure and I worried that I’d never be able to be a sister for all the demands of being my brother’s advocate.

But be aware that my different kind of normal is a life full of happiness and bitchitude and laughter and tears. We have challenges and set backs and achievements and victories.

More often than not, we share a meal…catch up on what’s new…and communicate with each other in a way I never dreamed was possible until it simply was.

Not a life of regrets and guilt, but a life where sometimes my brother gets on my last nerve…and that’s okay, because all brothers can work a nerve.

Sometimes I worry about my brother’s future and happiness…and that’s okay, because people who love each other want the best for each other and sometimes fret over shit like that.

April is Autism Awareness Month…a month out of a year in the lives of millions.

Be aware.






This I write for my brother Bill, lover of sometimes foods all the time, who I love beyond measure even when he works my last nerve.


autismville said...

Thanks for writing from a sister's point of view.... and for reminding everyone that kids with autism grow up to be adults. So important..

Anonymous said...

Thank you for such a strong and loving piece about your brother. You're right. The challenge is to create meaningful lives for all the children with autism who grow into adults.


Jan Solock said...

Thank you for writing from your heart and the truth. Wonderful.

Anonymous said...

Thank you for this post. Just awesome.

Ginny said...

Well said. Thanks.

Unknown said...

Yes, than you. My husband has aspburgers. Or what we call half-aspburgers. On some days, it's barely there, just an addiction to too much detail, or just an inability to sort out for himself what's important. Lack of executive function is what the shrink calls it. Other days, I totally relate--my last nerve is gone. But mostly, he's my husband, and a damn good, loyal, kind, gentle, and honest to a fault man. I could do worse.

Unknown said...

Yes, than you. My husband has aspburgers. Or what we call half-aspburgers. On some days, it's barely there, just an addiction to too much detail, or just an inability to sort out for himself what's important. Lack of executive function is what the shrink calls it. Other days, I totally relate--my last nerve is gone. But mostly, he's my husband, and a damn good, loyal, kind, gentle, and honest to a fault man. I could do worse.

FunkyStarkitty50 said...

Thank You. My son is on the Autistic Spectrum--he's high-functioning, but he definitely has his moments when my patience is pushed to the edge. I'm glad that people are willing to discuss this and I do my part by donating when I can, or more than often, educate people about this epidemic. Autistic people are a gift and they change the people around them more than anything else. I'm a more tolerant, accepting person because I have him in my life.

Casdok said...

Be aware - everyday!

Miss Trudy said...

I think it is important how you highlight that there will be stress and that it is okay, because I can imagine that many caregivers do get to the point of almost snapping from stress and feel guilty about it. Perhaps don't even seek for help or even somebody to confide in, because they feel that it is wrong to feel that stress and irritation. Your voice makes it clear that it is there, but that doesn't mean that there is no love. Lovely post.

windy city girl said...

"Be aware…that autistic children will become autistic adults. A body doesn’t grow out of autism."

THIS! Thank you for this post. My brother is autistic and turned 26 last year. I do feel like autistic adults get forgotten in the struggles for funding and programs. I'm so glad you shared your perspective on this.

TheWiredOne said...
This comment has been removed by the author.
Laura said...

Beautiful, important post, Shark-fu. People with autism are adults for a whole lot longer than they are children, and we need to be prepared as a society to provide the care that they will need.

I love how Brother Bill likes "sometimes foods all the time." I knew we were kindred spirits. :):)

Love, Laura

Kowalski said...

I love your blog, but your posts on autism are perpetuating harmful stereotypes and they are insulting to us.
If you want to know what autistic people are thinking, we have a post in response up and a discussion about it:
To all the “Autism Parents” and “Autism Siblings” who say they “Live with Autism”.

Anonymous said...

my son has autism (every single day of his life by the way) and as often as i think of his uncertain future after my husband and i are gone i think of his sister who at age 8 is his best friend and best teacher! i worry about her probably more, i don't want her giving up anything out out a sense of dedication (or whatever) to care for her brother. i want her to have it all, and i want my son to have a full life as well. after i'm gone it'll be out of my control, i know. but those are the things i worry about. bill is very lucky to have you in his corner! you're open honesty is beautiful...and trust me , we mothers who have little guys who have autism...a day doesn't go by when we don't think of them growing up!!! (oh boy!)
thanks again for your post

Shark-Fu said...

When I write about my brother I am writing about my brother...who is autistic. I do not speak for him...or autistic people. I speak as a sister and I will continue to do so.

And, for the record, my brother's autism is not a stereotype...and I am deeply offended that you would make that accusation.

So, just so we are clear - I do not speak for autistic people. I speak for my damn self, as a sister.

And when I want to know what autistic people think I ask them...maybe you should try to do the same when trying to determine what I think.

Kowalski said...

Your reply shows that you do not really care what autistic people think, especially not the ones who disagree with you. Why else would you be so condescending to me?

I didn't say your brother is a stereotype, I said your posts perpetuate stereotypes about autistic people, this for example: "Just once, I’d like to see a severe autistic on t.v. rather than the high functioning genius who makes $30,000 on paintings of London." from an earlier post of yours.

I also didn't determine what you think I was merely responding to what you wrote.

Shark-Fu said...

If that comment is an example of how I'm perpetuating stereotypes then you and I are just going to have to disagree.

I personally think that 60 Minutes and Dateline NBC and all the other news outlets need to cover normal families with a loved one with autism - and I had just watched a segment that was anything but that.

I was frustrated and I wrote about my frustration - that's the perk of having a blog. You don't agree and dislike how I expressed my frustration - that's a perk of having an opinion.

Since I didn't reject your comment I think we can skip the "you don't wanna listen" dance and just say we went.

No agreeing with you is not the same as not listening to you.

Here's the thing - I appreciate your critique and will keep it in mind when writing about my life.

But I will write about my life and my brother is a major part of my life.

And the comment section will continue to be an outlet for you and anybody else who disagrees with me or wants to amplify or clarify or vent or whatever.

TheWiredOne said...

I wrote that post that Kowalski linked to above on my blog and crossposted it to Here Be Dragons for a very important reason. You said that "have lived my entire life with autism." The fact is, you don't. You may have an arduous task assisting your autistic brother, but that does not mean that you live with autism by any means. I may be young enough that my father is about the same age as your brother (born in the same month as well), but I know a hell of a lot more of what living with autism is like than you do. I have faced abuse in the name of making me "normal" and when I talk about the abuse I have faced and about my sensory issues, it is swept under the rug in favor of hearing those who are not autistic on how we have behavior problems, don't make eye contact, etc. While autistic people like me receive abuse in physical, emotional, and psychological forms, their parents and siblings receive nothing but praise from the *Normal People Who Actually Matter* about how "brave" they are for "coping with" their autistic family members. While our experiences with what is done to make us "normal" are discounted and dismissed, "autism parents" and other family members like you get the monopoly of media attention. You may live with autistic family members, but you don't live with autism for the simple reason taht you don't have to endure the hate that autistic people endure on a daily basis. You said "And when I want to know what autistic people think I ask them." Uh, no. Our powers of speech don't work as you want them to, only when you ask us to speak and only along your party line. Whether you like it or not. We are here, we are angry about the mistreatment and dismissal we have endured, and whether you like it or not, we are going to speak up when we see it on the Internetz and you cannot silence us. Even if this doesn't make it through the censor, I will find a way to get this word out.

Shark-Fu said...

You know, there are some days that make a bitch wanna throw up both my hands and holler.

I've just been accused on silencing two people...after posting all of their critical comments including those that link to an article that is critical of me (and I rarely allow folks to market their shit through my comments).

Fuck it.



Shannon Des Roches Rosa said...

Kowalski and Sadderbutwisergirl, my son, like Shark-Fu's beloved brother, is not able to speak for himself. I wish he could, but until then it's autistic people I look to for information and guidance as to what he's thinking and feeling.

By focusing on the phrase "living with autism" instead of Shark Fu's post in its entirety, You have put parents, siblings, and caregivers in a no-win situation.

When we say we're listening, you tell us we don't understand. When we do everything possible to speak out about how much we love the people with autism in our lives, you tell us we don't have to endure the hate that autistic people endure on a daily basis.

I am sorry, truly sorry for all the hardships and challenges and abuse you have faced. That is why Shark Fu and I mobilize for actions like yesterday's national call-in day for the Restraint and Seclusion act.

We may not be doing and phrasing things perfectly, but we're doing the best we know how. And we're listening as hard as we can. I would be grateful if you could focus on telling us what you'd like us to do, how we can make a positive difference for our siblings and children.

EJ Willingham said...

I came over here to read your post and the "controversy" around it. Every movement, every group, has the folks at the edges. They've shown up here in a pair and hammered on you. Your experiences are yours to describe in *your* words and *your* phrasing, lovingly and without being offensive. Too bad if someone chooses to misapprehend your meaning. You've certainly done your best to explain it sufficiently.

I've lived my entire life with OCD. It's not my OCD, but its influence on my life was overwhelming and destructive, and it is integral to everything that I am. Even without having pathological OCD myself, I lived OCD. I felt it, I operated under it, I practically breathed it. I felt its repercussions and still do. "I lived with OCD." It's a simple phraseology that people have used for time immemorial to anthropologize something. To have people leaping on you and giving you shit about it and making the accusations I've read here? That defies logic. Why draw a line in the sand and attack over a common mode of expression like that? Jesus.

I won't and wouldn't say the negative things about autism that I do about OCD, even though I live with autism every day. Do I have to have autism myself to be "allowed" to say that? No. But let's just say that when it comes to sensory overload, social deficits, and other features, my children came by their autism honestly. I understand them and autism deeply, and it's not because I'm just wildly insightful.

And finally, for a nice syllogism: I can say, legitimately, that I live with autism every day because I live with my children every day. We "autism parents" (quotation marks theirs) are undoubtedly allowed to say that we live with our children every day, right? And many autistic people (rightly) assert that if you call autism a disease, you're calling them one, because they are autism. So,if the argument is that autistic people are autism and autism is autistic people, then how is it wrong for me to exchange "autism" for "my children" or for you to exchange "autism" for "my brother"? It isn't. I live with my children every day. And, I live with autism every day.

Jen Myers said...

After reading this list of comments, I have become unsure of what to say. (great, and I thought this life was already sort of tricky.)

I will say this, my son has autism (and CP) and his little sister will probably have a lot to do with his care when he is older. I appreciate your point of view, and I will send my daughter your way, when she is old enough to read (okay maybe a few years after that).

Shark-Fu said...

That you felt unsure about sharing your opinion is hard for me to read.

Speak your mind...that's a right I'd defend for my worst enemy.

And please do send your daughter to one of the many online communities for siblings...there are even a few for sibling guardians, as my sister and I are.

I may not always agree with everyone in those communities...and Gawd what a boring world it would be if I did...but I have gotten tons of support, time and money saving advice and met some fantabulous people too!

Blessed be.

EJ Willingham said...

Correction: Not "anthropologize" but "anthropomorphize." According to the Urban Dictionary, "anthropologize" means "to regret majoring in anthropology." Clearly not what I meant to say. :-)

Unknown said...

For Autism Awareness Month: I will include on my list of things to do the following: To take a few extra minutes to show my appreciation of the people we have in our community who will stand beside those of us on the autism spectrum, and support our efforts as we find our voices in a world which has denied us our place for far too long.

It can't be overlooked that the language which has been commonly used for too many years when referencing autistics is fast becoming outdated and offensive. With that said, I believe it is our responsibility as self-advocates to educate others respectfully, and with a view to helping them see the benefits of allowing autistics to speak for themselves.

In my more than 45 years on this planet, I have seen numerous language changes with respect to disabilities, and the causes we advocate for as it pertains to progress. I'm constantly reminding myself to take a deep breath, count to 100, and ask someone else "what they meant" before challenging "what I thought they meant." Admittedly, I am more often than not surprised to discover how many times the person I had taken offense to was in actuality in complete agreement with me to begin with. Further examination typically reveals that the mis-communication stemmed from certain buzz words or key phrases they chose to use which were in need of a refresher.

Honestly, I am almost always sure that whenever I post something on the Internet, I will manage to screw it up and offend someone. Not because I don't "get" autism (after all, I am on the spectrum) but rather because I didn't phrase something "just right."

Shark-Fu, I appreciate your blog and your willingness to share. I am looking forward to presenting with you on the Autism Panel at the BlogHer Conference on August 6th in New York City. As the only self-advocate on the panel, I am a bit overwhelmed at the thought of what this means to have an opportunity to share "first hand" some of my autism experiences. I am looking forward to meeting you in person, and hearing more about your sibling & family experiences as it relates to autism. Much of the unconditional love and support I receive on an ongoing basis is from my siblings, and this continues to mean more to me than I have words to express.

Shark-Fu said...

Sharon daVanport...
Thank you.

I look forward to meeting you, presenting with you and learning from what you have to share.

Thanks and blessed be.

Kowalski said...

Let me just summarize everything:

Blogger writes about a minority group they're not a member of, uses every disability TV trope like how "inspirational" family member of minority group is.

Commenters praise blogger how wonderful she is for loving a family member of minority group because that sort of thing is so worthy of praise.

Member of minority group feels the whole thing is patronizing.

Blogger says: If I want to know what people of your minority group are thinking I ask them.

Now if we were considered human beings everyone would agree that this is inordinarily rude and obnoxious but hey, we are "marketing our shit" when we're talking about our own torture and abuse on our blog and want someone to read our own experiences and how marginalization contributes to this systemic abuse.

Blogger is of course terribly offended and thinks someone accused her that her feelings and thoughts are wrong although nobody said that, also claims it's about two people disagreeing, and not about systemic oppression and marginalization.

Someone else thinks members of minority group are "lashing out" and someone else thinks we have a duty to be "respectful".

Emily and Sharon if you had actually read our blog you'd know that I'm no longer a "self-advocate" who's part of that "movement". I've moved on from 101 oppressive crap like the Tone Argument.

Grafton said...

Squid: And we're listening as hard as we can. I would be grateful if you could focus on telling us what you'd like us to do,

Maybe you need to listen harder than you can.

We're telling you that one thing we'd like you to do is stop appropriating our situation by saying you "live with autism" when what you live with is an autistic person. This is hurtful. It makes us invisible. It devalues us.

It also implies that what's important about autistic people is how we effect our loved ones. Which is, as they say in feminist blog-o-sphere circles, 'triggering' to people like me. (I didn't get effective help for my childhood problems. Many members of my family blame me, even thirty years later, for the failure of my parents' marriage, something I evidently caused by being so 'difficult.' Mini versions of this 'your peculiar suffering means nothing in the face of my normal irritation with you' happen to me all the time.)

Shark-Fu said...


Thank you - that was clear and I've got it.

And thank you for breaking down the why too.

Got it and will do.

Shark-Fu said...

By request, I'm posting a link to a related post published today here.

Shannon Des Roches Rosa said...


Tweeted the following:

Autism awareness action: Listen when autistic adults say "living with autism" is hurtful & devalues them #autism @sharkfu

Regards and with hopes for comraderie,


Yankee, Transferred said...

Never a dull moment over here. Shark-fu, good for you. You are a thoughtful blogger and a talented writer. There is a big difference between a troll and a commenter with a disagreement with what you say. My hat is off to you and to Grafton for talking it over. Well done. And aside from the 'living with autism' part, another excellent post.

Grafton said...

Hey. Wow. Communication. Cool.

Thanks, Shark-fu. You're stellar.

Since I seem to be doing well with this idea-transferring business, I'll try another.

I am not sure about Kowalski's assessment about the 'Inspirationally Disadvantaged' trope here -- your brother's role in your personal growth life-path thing seems like what you'd write about in writing about him as a sister. It's not a blog about him.


You say "our lives are a different kind of normal," which is true and needs to be communicated. I'm always happy to read it. I wish more people who have autistic family members would point it out.

But as soon as I get down to the comments section somebody seems to suck the pith right out of "different kind of normal" by heaping lavish praise upon you. Seems to me that lauding you as a hero for living with and maintaining a relationship with your brother is saying that it's not normal. Often they will write that Bill is lucky to have you, and while this is no doubt true it also seems to me, in the context, to indicate that he.. 'doesn't deserve your support' isn't quite right, but something like that. The really valuable stuff you write about the ordinariness of your life with him and the pleasure of your relationship with him gets undermined, and that seems to go unchallenged.

The Disability TV Trope I see bouncing around is the 'heroic caregiver' one, which implies that disabled people are so dreadful that living with them and helping them is a superhuman act of saintliness. It's also really good at erasing us -- the quintessential example being the creepy way that Helen Keller (writer, feminist, progressive, champion of peace and social justice, founder of the ACLU) is best remembered as a prop in the story of her non-disabled teacher's accomplishment.

I don't know. Maybe the praise and "he's lucky..." stuff in the comments on all your autism related posts is just what people say and belongs in my mental category labeled "Meaningless Verbiage Used In Social Bonding." Yet it does not seem to me to be quite the same as when people tell me what a nice fellow I am because I'm close with my mom. Puzzling. What do you think?

@Squid, thank you. Okay, depending on the meaning of comraderie. In any case, props to you for cephalopod love.

Shark-Fu said...


I'm a work in progress and I tend to see others the same comment section is a space where people share, challenge and correct and where we all learn from that.

But our sibling family (our father is dead and our mother is out of the picture, thank the gods) is sadly not the norm for many, whether they have a loved one with autism or not.

I'm lucky to have my sister and brother in my life...but we've each worked hard to get to lucky.

I try to make sure my readers know that just as I try to make sure they understand that not getting that isn't a non-started but rather is a starting point on the path to getting it.

'Tis that work in progress thing that we're on...

Grafton said...

Shark-fu, I'm not making the connection with your above comment.

What I mean is that I think it might be good if you'd challenge the 'heroic caregiver' comments to your autism posts by reminding people that while your life with Bill and your sister ain't no crystal stair (thank you, Mr. Hughes) it's not really so much less crystalline than those of other people, and it isn't a ladder of burning coals requiring superhuman powers to ascend. S'all.

Shannon Des Roches Rosa said...

@Grafton, I am all about the cephalopod love. :)

My beef is the prominence of organizations like Age of Autism, that both distract and absorb parents of children with new diagnoses, who froth about autism fear and horror and stolen children. There is very little love expressed for the children themselves (or their adult spectrum-mates) on such sites. I'm also weary of the media, who always use "the sorrow of autism" as their stories' hooks.

For parents, it can take years to bushwhack through all that crap, to reach the epiphany that we support our children not because we are showboating martyrs, not because we are noble or brave, but because *we love our kids* and that is everything, that we want to encourage other parents to reject the pity and fear, too - while still talking honestly about the challenges we're facing together. (And learning from those who, like so many voices in this thread, have more experience than we do.)

I very much appreciate this conversation.

faithy said...

Thank you for sharing such a heart warming and touching post. I have a son who too has limited speech and is in adulthood and i'm sure my daughter feels the same way as you do too. :)

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