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Posts Tagged ‘Autism Speaks’

My daughter does not have a disease like cancer…despite what PETA or Autism Speaks might imply.

My daughter is not God’s vengeance…despite what Toni Braxton may have once thought.

My daughter is no more a potential killer than any of you…despite what the Washington Post might say.

My daughter, Brooke, has autism.

She IS autistic.

Is being autistic all sunshine and rainbows and unicorns?

Um, no.

Are there days that Brooke struggles mightily, in part because she is autistic?

Sure, no doubt.

Are there days when Brooke excels, in part because she is autistic?

Absolutely.

***

Words matter.

Stigma matters.

Demonization matters.

The way Ms. Braxton or PETA or the Washington Post or Autism Speaks talk about autism undoubtedly has led to unnecessary  tragedy.  I am not trying to convince a struggling parent that their autistic child is a gift from god, unless you believe that ALL children are a gift from god.  I am not painting a picture that is all rosy and “happily ever after” when an individual or family receives an autism diagnosis.  I am not trying to hold a scared parent’s hand and say, “everything will work out fine”.

BUT…

But individuals, parents, families and friends need to understand that autism and being autistic is NOT a death sentence like cancer can be…

Individuals, parents, families and friends need to understand that autism and being autistic is NOT a punishment of the parent for some imagined slight against his or her god…

Individuals, parents, families and friends need to understand that autism and being autistic is NOT an indicator of murderous tendencies any more than being any other member of the human race is…

***

My daughter is autistic.

She struggles a little more than others.

She also giggles and smiles a little more than others too.

She sees the world a little differently than you or me.

Sometimes that hinders…sometimes that helps.

As her parents, Jess and I do what we can to make the world a friendlier, easier place for her to exist in, while providing her with skills that will allow her to navigate it.

***

For the love of whatever deity you pray to, please stop seeing her as a diseased punishment, hell bent on hurting people.

My daughter is autistic.

She is different.

And that is okay.

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She IS driving…

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Yesterday I posted this on Twitter:

Dear @peta,
Is it lost on you that you are demonizing #autistic people with your Got #Autism/ #Milk campaign? That action has consequences.

A little while ago they responded with a non-response:

@luau Researchers have backed up many families’ findings that a dairy-free diet can help kids with autism: http://t.co/yl9O76Gmve

No acknowledgement of dehumanizing autistic people; just uncited “research” not even tangentially justifying their actions.

And so I said this:

@peta you’re still demonizing autistics – THAT has consequences!!! How many parents have killed their autistic child b/c of demonization?

And this:

@peta if the “science” were true, there are better ways you could have said so…

@peta instead you chose to perpetuate the demonization.

@peta it’s lazy and narrow minded….and again, has consequences.

I kept wondering how I could put their campaign in a light that they might understand. The best I could come up with while driving down I-90 was this:

@peta let me ask u this – I know little about PETA….
…but many friends say u r money grabbing attention whores… Do you feel this is a fair assessment? Of course not…
…perhaps I should do my own research, right?
…so my question: did u interview anyone in the autistic community? And not @autismspeaks – they are a parent organization…
…did you speak to any autistic adults? Without cherry picking data?
…I would recommend speaking to the autistic community NOT the autism community.

So, I know it was completely ineloquent, but I would like to know if PETA ever even considered talking with autistic people? My guess is they would have found that in those autistics with lactose intolerance or dairy allergies, going off dairy would have shown improvement in some co-morbid issues, whereas in others, there would have been no difference in the way an autistic individual went through their day whether they had milk or not.

If PETA wants to be taken seriously, they should behave as one, instead of irresponsibly demonizing more 1% of the population.

***apologies for any typos – written on the fly on my phone***

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Today is Brooke’s 11th birthday.

11.

When did that happen?

Yesterday we were blessed to have many of her friends and classmates over for a birthday party that included a planned surprise (check over on diary for the details), live animals (her favorite was the chinchilla), dancing, a piñata, pizza, cake and dough babies.  I think it is safe to say that everybody had a good time.

https://www.youtube.com/watch?v=8TlX7kyXlCY

But even in the midst of all this fun, I was reminded just how different Brooke is from many of her peers.  Watching her throughout the party I was able to see just how far she has come and just how far she still has to go.  I don’t mean in the “to be more like her peers” sense, but more in the “developing an ease with her environment” sense.

Anyway, I was reminded of Autism.

***

Tomorrow is the first day of Autism Awareness Month.  It is a time that many of the big advocacy groups push awareness, fund raising, etc.  Undoubtedly there will be arguments and heated discussions between those who align themselves with the various groups.  As you may or may not know, for a very long time, Jess and I were supporters of Autism Speaks.  Over the course of many years, we walked their walks, we ran their races, we raised a lot of money for them.  Last November I ran my last race with them – the New York City Marathon.

Days later, Suzanne Wright would write those controversial words, essentially marginalizing autistic adults.  It’s her organization.  She can do with it what she sees fit.  Jess and I could no longer support them.  It wasn’t easy to walk away – in fact, I wrote about the first Charity Miles run I took post-speech…a sad, difficult day for me.

I moved on.

But here we are, on the eve of Autism Awareness Month.  I still get emails from Autism Speaks, urging me to “Light It Up Blue!” for awareness.  As much as I want to, I cannot.  I know that Autism Speaks does not own the color blue, but it seems that they have co-opted it and made it their own (along with the puzzle piece).

Autism Awareness Day is the day after tomorrow.  Many people I know and respect will light it up blue.

I cannot.

Instead, I ask you to consider another option.  The whole point of the “Light It Up Blue” campaign was to get people to ask, get people curious, get people aware.  How about instead of vaguely inviting people to ask questions about autism, we instead do so overtly.

***

Autism

Awareness
Acceptance
Support

Love

***

respect the stim

celebrate neurodiversity

***

let’s talk about autism

***

autism is one word,
but there is no one autism

***

nonspeaking does not mean having nothing to say
question what you think  you know about autism

***

These phrases are on T-shirts (click on each phrase to link to the shirt) that Jess designed in response to our older daughter asking what we should do for Autism Awareness Day now that we were no longer affiliated with Autism Speaks.  Initially we were stumped; wearing blue just didn’t seem right anymore – I have even retired the Blue Afro.  I don’t say this often enough about my wife, but I think she is brilliant.

I know that at the time of this posting it is essentially too late to get these shirts for Autism Awareness Day, but I hope you will consider not only purchasing one, but wearing it, not just for the month of April but all year round.  Autism awareness isn’t, shouldn’t be just a day or month out of the year; it should be 365 days a year.

***

As my baby girl turns 11, I ask you to help me…no, scratch that…help my Brooke make “awareness” more than just wearing a color or lighting a bulb…

Challenge your family, friends, acquaintances, yourself on what we know about autism…

Talk about autism…talk about the many autisms…

Help Brooke turn awareness into acceptance, support, respect of differences, but most importantly, love.

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Whoever heeds instruction is on the path to life, but he who rejects reproof leads others astray.

Proverbs 10:17

Last Friday I wrote about the myth about human trafficking and the Super Bowl.  It was my response after reading this by this “health” blogger.  The blogger and I have had our philosophical differences in the past, but to me, this was pretty cut and dry.  I left a few comments with links to groups that are in the trenches of human trafficking, pointing out that they, these advocacy groups for the victims of human trafficking, were saying that this myth was hurting, not helping, the victims of this horrible crime.

Her response?  Nothing.

I pointed out that some of the very sources she linked to at the bottom of her post had altered their opinions on the matter, so shouldn’t she?

Nothing.

The very people she is claiming to care so much about are asking her to change her stance and her response is…silence.  Now, I don’t doubt that this blogger’s heart is in the right place, but when you let pride overwhelm what is right, what does that say about you and everything else you supposedly stand for?  What does that say about all of the “out of the box” remedies and life style choices (some of which are brilliant) she advocates for?  If she can’t go back and admit she is wrong on something like human trafficking, how can we trust that the health choices she advocates for haven’t been debunked or even classified as unsafe?

Pride…it can make you do stupid things.

***

The other day fitness model and personal trainer Bella Falconi posted this on her Instagram Feed:

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Inspiring, right?  I used to feel the same way until someone pointed out to me years ago that although everyone does in fact have the same 24 hour every day, some must work 2 or 3 jobs, through no fault of their own other than life, just to put a roof over their children’s head and food in their children’s stomachs.  After a 16 hour day, as a parent, would you choose to go work out or spend some quality time with your children?  I said as much in the comments section, noting that perhaps until one is a parent, one cannot understand.  I can’t actually tell you exactly what I said because Bella Falconi’s response was to delete and block.  Now granted, this wasn’t the first time I had called her out on something.  It was the second.  The first was when she used the term “retard” in a derogatory manner.  Then, just like the blogger above, the response was silence.  At 27, this may simply be the immaturity of youth or that she has lived in the bubble of her success for too long.  I don’t know her, so I can’t say.  What I can say is that the response, much like the one above, seems to be rooted in pride.

***

A few month ago, Autism Speaks held a “March on Washington” event.  Leading up to it, Suzanne Wright wrote her now famous op-ed about lost children, broken families and cities build for autistic people.  As Autism Speaks patted itself on the back with a lavish party in DC complete with a Broadway review, thousands of autistic individuals and their families tried to make it clear to Suzanne and Autism Speaks that in order to truly speak for autistic people, the organization needed to let those people actually speak…but more importantly, Autism Speaks needed to listen.

The response?  Nothing.  Autism Speaks continues to believe that autistic individuals should not have a voice in how the world’s largest autism advocacy group operates.  One doesn’t have to have a Ph.D. to see just how wrong this is.

***

This all led me to posting this the other day:

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And maybe that is what it comes down to.  Perhaps Sarah, Bella and Suzanne all feel that admitting that they are wrong on something will be perceived as a sign of weakness.  Perhaps they are afraid that if they admit they are wrong on something that people will call into question everything that has come before.  I believe the exact opposite to be true, because if you are willing to admit that you make mistakes, it shows me that you actually care about what you are putting forth; that at some point, you will go back and double-check and triple-check your work; that if someone says, “hmm. I don’t know about that…”, you’ll go back, see if there are new facts or new science either backing or refuting what you say, and you will act appropriately.

Admitting you are wrong, when you are wrong, is a sign of strength.  As my friend Allissa said, “Knowledge + Humility = Power”.

***

Whoever heeds instruction is on the path to life, but he who rejects reproof leads others astray.
Proverbs 10:17
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I went out for a run this morning.  5 miles, 39 minutes on the nose.  I went out with no particular plan, but I eventually found myself at the local high school track.  While there, for no apparent reason, I decided to do a couple of Fartleks at 5 minutes a piece, averaging at about a 6:20 pace.  The run itself really is nothing to write about; it is rather how my run started that has me sad.

For over the past year I have been using the Charity Miles App for almost every run I do outside.

It is ingrained into my routine – step outside, put in earbuds, start my playlist, start the Charity Miles App, swipe to the Autism Speaks page, hit go, run.  For almost every single run over the past year and a half, this has been my routine, whether it be a training run, a fun run or a race.

The same thing, over and over.

Every run was inspired because I knew every extra mile was a little extra money going to Autism Speaks…every extra stride was money being spent on awareness…every step was improving the lives of autistics and their families…

With the family out on various errands and activities, I decided I needed to go for a run.  I went through my routine – step outside, put in earbuds, start my playlist, start the Charity Miles App, swipe to the Autism Speaks page, hit g…

I stopped.

I thought of Suzanne Wright’s call to action.

I stared at my screen.

I thought of Suzanne broadly painting every family with autism as lost.

I sighed.

I thought of Suzanne making it clear that their focus was on children only.

My thumb hovered over the start button…wavering just so.

I thought of the countless autistic adults who are being left behind by Suzanne Wright’s call to action.

I sighed and looked away, hanging my head.

I thought of the fact that Brooke is only a handful of years away from being an adult.

Sadness overcame me as I realized I just couldn’t bring myself to pressing start.

I swiped through the other very worthy charities that Charity Miles has teamed up with.  I finally settled on Achilles International, an inspiring group that helps disabled athletes compete in events like the New York City Marathon.  Although I did not cry outwardly, I was doing so on the inside.

Image

…feeling lost and sad after 5 miles…

I am sad.

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There is a certain freedom I feel when I run – the rhythmic beat of my feet, the wind in my hair, the straining of my muscles and lungs, all contribute to a feeling that I am free to go, at least for a short while, wherever my feet may take me.  For a while, running served solely as my version of therapy.  Along with the everyday struggles we all experience in life, our family also has an autism diagnosis.  I will readily admit I struggled with the concept that my baby girl was not going to lead the life I had imagined for her.  It took me some time to adjust my way of thinking…evolve, if you will.  Initially running gave me an outlet, a place where I could funnel all my frustration and anger and return physically spent but mentally refreshed and recharged.  It wasn’t long thereafter that I realized that I could use my running, the activity that had given so much to me over the course of a year or two, and use it to help my daughter and those like her.  Running would not only help me deal with my daily struggles with my daughter’s autism diagnosis, it would help make the world a better place for her.

In the very beginning of our family’s journey with autism, my first thoughts were focused on a cure.  I was scared, not for me, but for my baby.  How on God’s green Earth was she ever going to make it without being cured of this…this…thing?  My initial reaction to Brooke’s diagnosis was because there was so little out there in the way of awareness and accommodation.  For months I would cry when nobody was looking, whether it was in the bathroom in the middle of the night or during the day when I was home alone.

Eventually I came to understand that what was best for my baby was autism awareness.  What would a cure mean anyway?  Who would I be left with?  Through our initial interactions with Autism Speaks, I became enamored with their awareness campaign and their dogged pursuit of health insurance reform on a state by state basis. In 2010 I began running for Autism Speaks in support of these two things, knowing that awareness and health insurance coverage for autistics would make my daughter’s life easier, better, more accessible.

Since Fall of 2010 I have run three New York City Marathons, two Boston 13.1 Half Marathons, one 100 Mile Ultra-Marathon and streaked 167 straight days while using the Charity Miles App, raising thousands of dollars, all in support of Autism Speaks because I believe in awareness and I believe in health care coverage for autistic people.

Awareness leads to understanding which in turn leads to compassion and empathy which hopefully evolves into acceptance and inclusion.  Health care coverage means families worry less and have more time to focus on what is most important – their family.

Suzanne Wright has painted me into a corner.  She has made it clear that her focus is on children and on a cure.  She has chosen to ignore self-advocates and the whole of adult autistics.  I understand that the autism she and her family experiences may be different than that of mine.  I even understand why some families seek a cure – I was one of those people once upon a time.  There’s a reason why they seek it, and for some, it has nothing to do with autism and more to do with how society, and certain advocacy groups, views autistic people – there is a difference.

Some day, Brooke will be an adult.  She will still be autistic.  My hope is that she will be able to advocate for herself and others like her if she so chooses.  I hope that people will listen to her just as intently then as they do now.

Suzanne Wright has painted me into  a corner because in her plan, there will soon be no room for Brooke; there will be no place for her in Suzanne’s world view.  Why does this matter?  Because Autism Speaks has the biggest platform, the loudest voice and the most money.

Throw me a bone, Suzanne.  Tell me you understand that there is more than just one autism.  Tell me that you understand that our children will grow up to be adults.  I know many parents mourn the child they thought they were going to raise.  Honestly though, how many parents, of any children, actually end up raising the kids they imagined they would have. 

There are times, Suzanne, where I and my family feel lost.  That doesn’t mean we are lost.  There is a huge, HUGE difference.  Throw me a bone, Suzanne.  Tell me that the opinions of autistic adults, no matter how they communicate, matter.  Tell me that you’ve gone back over your last op-ed piece and realize that your words were too harsh, too exclusive, too narrow.  Tell me you want John Robison back and that you promise to add several more autistic adults to your board so that you can better direct what it is that Autism Speaks stands for.  It’s right there in the name, Suzanne.  Autism Speaks.  Please, throw me a bone.

Running is where I find freedom – it is a joyful experience for me.  You can see it here after 26.2 miles of spreading autism awareness.

...after 26.2 miles of spreading awareness...

The New York City Marathon 2013…after 26.2 miles of spreading awareness…

Where does that energy come from?  My daughter…my autistic daughter who will someday be an autistic adult.  Someone who is only about 10 years away from not fitting into your model anymore.

What am I supposed to do Suzanne?  What am I supposed to do?  Throw me a bone, please, because you’ve painted me into a corner.

I leave you with this thought that came mind this morning:

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Yesterday I paced a buddy of mine to his first NYCM finish – we started strong, got knocked down around 18, but got up and finished strong.  Way to go brother!

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