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Posts Tagged ‘autistic’

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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There are a lot of parents of autistic children out there who just want to “fix” their child.  Although I believe my view on Brooke’s autism has changed over the years, I do distinctly remember a time when I felt exactly that.  Have I fully embraced the neuro-diversity camp?  No, but I do feel like I see more clearly why that group is so vocal, so adamant about their views, thanks in part to Jess’ outreach to the autistic adult community.

Still, as a father, it pains me when I see my baby struggling, and I can’t help but quietly wish that certain aspects of who Brooke is were different.  That sense of helplessness is what can get us, parents, into trouble.  We will grasp onto the slightest bit of hope, the tiniest shred of promise, the smallest particle of “proof” in the hope that we can “cure” our child of what “ails” them.  Whether we do it in our heads or actually move forward with it, we jump to attention when the snake oil salesperson presents us with an “opportunity”; we go to “that place” when the doctor says, “well, maybe…”

***

Yesterday Brooke has her annual check up with her pediatrician.  I like our pediatrician.  She’s the type that approaches things with a “don’t worry about it until you have to worry about it” attitude.  She sometimes seems cavalier about things, but because of that, when she says something needs to be done (like when she overrode the ER and said that Brooke needed an EEG stat a few months ago) you know she means business.  So yesterday we had Brooke’s annual.  After taking her measurements (at 10 she’s only 49.5 inches tall and weighs only 50 lbs.), the doctor looked at her growth chart and said she wanted to test for Celiac disease.

My immediate thought was really!  now this?  another goddamned thing to deal with??? Jesus Effing Christ!!!

We would have to draw some blood and have it tested, which we will do in the coming weeks.

What does this have to do with grasping for hope?  In talking about the effects of Celiac disease, the doctor mentioned some of the better know side effects (lack of growth, etc), but then she mentioned that in some kids Celiac disease can cause ADHD type symptoms and affect the child’s ability to learn.  Taking into account Brooke’s lack of growth and her precipitous drop in verbal IQ over the last two years, the doctor felt that we should cross our t’s and dot our i’s.  The likelihood is that it is not Celiac disease and that she simply burns through her calories because she never stops moving.

But what if?

But what if there is something going on there? What if there is something going on in her gut (shown to be our second brain) and it’s affecting her brain?  What if she went off of gluten and suddenly the anxiety and reading comprehension issues and processing issues went away?

What if, what if, what if…

Yeah, I went there.  I’m a parent.  I can’t help it.  I went to the exact same place when we were dealing with the possibility that Brooke was having epileptic seizures.  A small part of me hoped for the worst so that the path forward would become clearer – that there might be an answer.  How awful is that?  There is a small part of me that is now hoping, maybe it’s been Celiac disease all along?  Maybe the autism is much milder than we think.

Grasping for answers.

Grasping at any possiblity.

Grasping for hope.

grasping for hope...

grasping for hope…

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My daughter has autism.

And according to TIME Magazine, she is crazy.

This is the screen shot of John Ashley Cloud’s article on the DSM-V:

Screen shot 2012-12-04 at 9.08.34 AM

click on image to link to the article

 

First item up in the article?  The redefining of autism and the possible affects of such redefinition.

***

Do I believe that Time Magazine really thinks that my little Brooke is crazy?  No.  Do I think that the author John Ashley Cloud truly believes my girl is crazy?  I’m pretty sure he doesn’t.  Do I think that he or whoever entitled his piece is a complete and utter asshole?  In the words of Sarah Palin, You Betcha!

The article in and of itself is not a bad one.  It’s fairly matter of fact in its approach.  But that title…that title!

I have nothing against the word “crazy”.  I use it all the time.  Random acts of violence?  That’s crazy!  A buddy of mine running a sub-3:00 marathon his first time out?  That’s crazy!  Preparing for the Mayan apocalypse on December 21st?  That’s crazy!  The Giants beating the Pats in the Superbowl on late 4th quarter drives?  TWICE?  That’s crazy!

Setting back years and years of hard work by those in the mental disability and disorder community with the simple stroke of a keyboard?  THAT is crazy!!!

As a society we have inched ever so slowly toward a more inclusive society.  More and more we are realizing the gift of having all people participate in our communities.  Slowly we have inched toward removing the stigma of either mental illness or disability or disorder.

Cloud’s article does nothing to change that, but the title does that and more.  We live in a headline society.  That is not a gripe, that is a fact.  Just look at this past election cycle.  So many of us get our news and information from either the headlines or from the 50 word bullet points at the beginning of an article.  The only things we WILL read are those articles we find most interesting; ones that reinforce our own ways of thinking.  That’s why a title like Redefining Crazy is awful, disrespectful and downright dangerous.

People will skim over this article and walk away thinking, wow, autistic people ARE crazy…I mean they flap their arms and run around and make strange noises. And they will hold on to that headline because that is what sticks in their head.

Now before you accuse me of joining the ranks of the PC Word Police, I want you to think about what the word “crazy” means to you.  I’m sure there was a time when it was a clinical word.  Is that how the word is used today?  Would you go up to the mother of a child with what was formerly known as Asperger’s and tell her that her son or daughter is crazy?  For those of you who know my Brooke, would you say that she is crazy?

Crazy is defined in the dictionary as:

mentally deranged; demented; insane.

I would not put my Brooke in that category, but thanks to Mr. Cloud, someone who doesn’t know her, but knows her diagnosis, might.

I hope that TIME and Cloud will change the title of his article and issue a general apology.  TIME used to be such a wonderful, even handed magazine, but lately they’ve been acting like a mud-slinging headline grabbing rag.  I called them this morning to cancel my subscription.  I hope you will consider doing the same.

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