For Susan Dominus of The New York Times

An Autism Awareness Message for reporters like Susan Dominus from The New York Times, who feel they can trivialize anything for a good spin...

The above picture is my son.

I didn't take this picture for the purpose of sharing it anywhere, except for my own personal documentary of my "Life with Autism".  The picture was sweet and peaceful to me, taken right after he had yet another chaotic seizure in the tub.  I texted that picture to my husband at work so he would know to pray for his sweet son that day.

But in light of the recent story in The New York Times, by Susan Dominus, (read here), I felt this picture would go well with my reply to what she implied.

Apparently my warning to her at the event my Autism organization co-hosted where Dr. Wakefield was a featured presenter, that she quoted, wasn't clear enough.  She had come up to me and asked about our "armed guards" and my thoughts of Wakefield's work, and shared that she was following him to do an in-depth article about him...  I half-jokingly but totally seriously said, "Great, be nice to him or we will hurt you!".

I was honored to receive a call from her a couple times over the next few weeks asking more about our son and how we came to know of Wakefield, (er, should I now refer to him as: The Autism Guru), and subsequently get treatment for the very things he found in his research, for our son.

But now, sitting here after having read that article, I could very easily have that ruin my day.

But it won't.

It's sad, yes.  But not surprising.  In fact, thought processes like hers, that I'm sure she felt was good journalism that might earn her an award of some sort, are a dime a dozen, if worth that much.

All one has to do is refer to Brian Deer's "journalism award" for confirmation on that....

Wording something to have readers infer that my son would have miraculously "matured out of" those horrible daily bouts of diarrhea, after a decade of suffering from it already, is not provocative, it's pathetic.  And it shows a total lack of knowledge about what Autism is and how it affects a child in so many debilitating ways.

Let's take my son's seizures as another example, Susan, et al.

For oh, the last six years now, he's had Grand Mal, Atonic, Myoclonic, and Absence seizures off and on, occurring in cycles ranging in severity.

This last cycle started in September 2010.  It is severe, and hasn't stopped.  He's been to the emergency room twice now because they were so bad he was dehydrated from them.

If a doctor actually took the time to relate the cause of those to a viral infection or result of vaccination, and actually found a treatment that helped them, and he recovered, would you as well conclude that he "just matured" out of them? That if I was just patient enough, waited long enough, they would go away?

Like you seemed to imply with the GI Issues he had for a decade?

We haven't been so lucky thus far.  No one has helped us determine the cause or potential trigger.  No one. And we've tried everything and have seen the best our medical center and insurance can offer us.

So do I just give up Susan?

Do I just take it on your authority that "he will mature out of it"?

Hmmm?

Tell me Susan, and all others like you --- when my son was in the tub like he was right before that picture was taken, and went into a Grand Mal seizure, to slip under the water if I wasn't there to potentially drown, what would you have me do?  What is your answer?

When would you start giving credit to a man who would dare be different, be brave enough, to help a child like mine no matter how controversial his theory?

It's reporting like yours, that keep children like mine in diapers all their lives, with incredible stomach pain, and dozens of bouts of diarrhea daily.

It's implications like what you wrote, that will keep my family on constant "red-alert" for seizures where we don't know if this one will be the last.  When he drowns in the tub in the split second we leave the room. Where he falls down the stairs during a seizure and breaks his neck.  When he is laying face down in his bed and has a seizure and suffocates because he can't breathe.

Where he has to lay on the bathroom floor naked because all the strength my aging-self had in lifting up my soaking wet, soapy, 145 pound dead weight son, was spent in just getting him out of the tub and onto that floor where all I could then do was wait until my son came home for lunch to help me get him dressed and on the bed.

Wakefield is not a guru.  He is not the leader of some misguided cult.  He is not some charming maverick that parents are smitten by.

What he is, is the sacrificial lamb for a group of people with nothing better to do than discredit one of the few physicians/researchers who have ever brought anything useful to the table of autism research.  You, the reporters who value their paycheck and career advancement opportunities over daring to sway a story against the tide of mainstream cover-your-ass-at-all-cost politics.  The physicians whose very reputations would be ruined if that truth came out.  The vaccine manufacturers who would have to find another way to fund their posh paychecks if they were ever held liable for the damage they have done.

Wakefield is simply a man who dared to tell the truth.

Who dared to listen and do something about it when a mother told him her son was in pain and no one else could tell her why or help him.

Wakefield is a man who believes in the Hopeism us parents cling to, because some days that's all there is to cling to...

That belief that through the muck and mire of reporting like yours that we must wade through daily, that Tuscany is indeed out there. We can see it clearly.  It is within our reach.  

And that someday we too, might actually get to stop fighting for a moment, sit down on our back porch, and enjoy it.

You want to call him something?  Call him a brave Knight who was not afraid to have given his life for the cause.

Or in American words, a hero.

Welcome to Autism...

Welcome to Autism!

I guess I should explain. This is my version of "Welcome to Holland!" or "Welcome to Beiruit!" -- two very different "Welcome's" floating around this National Autism Awareness month, describing what it's like to have a child diagnosed with autism.

I actually love both versions.

(links to both at the end after signature line)

In my role as facilitator for an autism organization, I get many calls and e-mails. Parents telling me their child was just diagnosed with autism and asking what they should expect. I hate that. I love that they found my group as a resource to ask those questions, but I hate trying to figure out what to say. How to say it. Do I tell them  the "Welcome to Holland" gentle story? Do I tell them the "Welcome to Beiruit" -- war-torn-country story?  How do you be politically correct to the rookie, get them to the neutral zone of Switzerland, when as a veteran you know their "Fantasy Island" was just nuked by that diagnosis of Autism?

Sometimes it seems nothing can be easy or clear-cut with autism.

Whether living with it, or writing about it, there is much criticism.

If you write too honestly, too provocatively about the hardships of life with autism - you are interpreted as being manically depressed needing medication. If you write to figuratively, too spiritually about autism, you are interpreted as wanting people to feel sorry for your child and needing them to throw you a pity party. And if you write too positively and too naturally about autism making it seem like a slight hiccup that will go away, you are convicted as being a false prophet needing to be crucified on the cross.

It really is sometimes, the epitome of a no-win situation.

But losing has rarely stopped me in life. I guess that's where the term "Warrior Mom" comes in, in describing mom's of children, youth, or adults with autism who simply refuse to give up.

We don't let praise make us prideful; and we don't let criticism cripple us.

At least I don't.

I write about the true, in your face reality of autism. If that seems negative, it's because autism sometimes is. I write about the true, spiritual, positive aspect of autism as it has impacted my life. If that seems too good to be true, it's because the Hopeism and Spirituality autism brings to me is sometimes out-of-this-world-crazy-too-good-to-be-true-yet-is.

Autism is not black or white. It's black and white. And to convey that it's neutral, gray, - is not a real picture.

Autism is indeed Holland or Beiruit, most definitely not Switzerland.

It's bittersweet irony at its best, and I cannot believe I've been on this roller-coaster for fifteen years now. In some ways it seems like yesterday, and in other ways, a lifetime ago. My son has come so far and yet has so very far to go!

It's mind-boggling really. In how I went from a young woman who at eighteen years of age said she’d never get married, much less have children, to a forty-something wife of nearly twenty-five years, and mom to two boys, – one of which has autism. Certainly not the yuppie life I had envisioned; and yet certainly not a life I would ever trade for all the yuppie status in the world.

Yet even though I wouldn’t trade this life, it is overwhelming….

The overwhelming unconditional love and devotion you can have for someone who doesn't even know what love or devotion means. The overwhelming heartache in watching that someone have to daily struggle so dang much to do the things others take for granted.

The whiplash of ping-ponging between those black and white emotions of life with autism.

Life with autism will sometimes make you scream, except this kind of screaming will not mean you are on "Mr. Toad's Wild Ride."  No, you'll be too exhausted for that most nights....

It'll mean instead, that some days, especially with the additional insanity autism advocacy brings, screaming is all you can do. It means that some day's, screaming will be all your child does.

I think the greatest disservice we can do for another parent is to portray autism as one size fits all.

It doesn't.  There's high-functioning, low-functioning, and the ever amusing PDD-NOS ----autism. The Asperger's and Rainman autism. The verbal autism, the non-verbal autism. The constipated autism, the leaky-gut autism. The autism a'la'carte' - with side orders of seizures, immune dysfunction, allergies, food issues, etc. There's those who will overcome their autism, and those who won't. There's those who want to cure their child's autism, and those who don't. There's those who see it as a blessing, and those who view it as a curse.

There is both the heartache of autism and the hopeism in autism.

To say that someone is not living in the reality of autism because they choose to see the hopeism, is no more false than thinking because someone shares about the challenges of autism they must be depressed and need anti-depressants.

Trust me, if anything is depressing about autism, it's the people who say that...

Autism is accepting that it is a cycle of anger, outrage, denial, discouragement, love, hope, and joy - that make no mistake, every parent goes through at one time or another, often all at once, and again and again with each stage of autism.

Autism is..... as my friend put it: ".... not the end of the world – but the beginning of a new one – just open your eyes and see….”

Of course I didn’t do that at the time. In fact, when my son was diagnosed, I shut my eyes so tight in denial that the jaws of life couldn’t have pried them open. I didn’t want to face it. But eventually, I did. I had no choice. And now that my eyes are wide open - I do have to say again, that there are many things in this new world I would not trade for all the "perfect-ness" of having the child I dreamed of while living on Fantasy Island long, long ago before being welcomed to Autism myself.

And finally, autism is humor.  Often in its most sadistic form, but humor nonetheless.

No, there’s nothing funny about this disorder that unites us in this club we never filled out an application to join. But I often use humor to characterize certain aspects of my life with autism. I do realize that a new diagnosis of autism, or any disability or disease, is far from humorous. I do not trivialize that aspect. I do remember very well what my emotions were the day, week, and month after I received the diagnosis of autism. Anything but humorous. But when your house is locked down tighter than the Pentagon so your child with autism won’t flood it, destroy it, or escape from it, – you have to look at that situation with laughter in order to keep your sanity. At least I do, being that my house has been flooded five times, my neighbor has on more than one occasion found that my son has flung open their front door and marched inside for an unexpected visit, in his underwear; and I can't begin to count how many full grocery carts I've been forced by a sensory melt-down (his not mine) to leave in the check-out line of the grocery store.

Yet on the serious side, I've also somehow made it to Washington, D.C. twice now to march with hundreds of fellow warrior moms, dads, doctors, legislators, & advocates - all for the cause of autism.

Depressed, self-pitying mom's don't do that.

Nor do they laugh as much as our family has over the years.

All of this gives me the authority, the wisdom, to welcome anyone to Autism. Or Holland. Or Beiruit. Or wherever the heck it will be for them, because of one thing I am most sure --- it's different for all of us.

Yet one thing is the same no matter which country.

You will never find yourself in the company of more acceptance, more love, more help, more support, more knowledge, than in this community...

(Even considering the things we don't all agree on.)

This community that I love so very much.


In good warrior mom and now Navy mom form -

              HOOYAH!
        Michelle M. Guppy
 MichelleMGuppy@yahoo.com

Welcome to Holland 

Welcome to Beiruit 

When there are no RSVP's to the Pity Party...

Autism awareness is interesting, I'll give it that!

In my fifteen years now of "Life with Autism" -- I've learned a lot.  It makes me not so regretful that I never finished college.  I could have never learned half of what I've learned since autism, with a degree, no matter how many letters preceeded or followed any title I would have had upon such graduation.

(go to, and finish college Matt.... or else!)

I instead, have what you would call one of those "Life experiences" doctorates.  Or whatever is the highest degree nowaday's.   I don't keep up.  No time.  Too busy living for the moment, and sharing those moments with others in hopes of putting a bit of inspiration, encouragement, and realism into the mix.  And if I happen to plant a seed or spark an interest in what gets me through those "Life experiences" -- my Faith, - then I consider myself to have done good.

With all that said, there does come a bit of ..... negativity sometimes about what I've written.  And that's ok. That's what makes America,  -- America.  That we can share different opinions.  We can disagree.   I have actually learned the most, from those who have criticized the most.  Which in itself, goes contrary to everything I've experienced at times.   That criticism is bad, avoid it at all extremes!   Blech!

I've never understood that.  The criticisms I've experienced have shaped me.  I've learned from them where I've needed to, and though I didn't like them at the time, grew to appreciate them.  I've gained resiliency from them when they were just that, bitter criticisms that had no merit and were made in ignorance of the situation.

Which brings me to the ongoing debate in the autism/disability community, of pity versus realism.

I think we, the autism/disability community, get this confused the most.

We aren't to say anything negative about anything. We aren't to let on that it's hard.  We aren't to admit that perhaps some parts of "Life with Autism" are not in fact, natural.

(Most of those mantra's by the way, coming from those whose children who have disabilities, are now in college and weren't smearing poop on the walls for a decade.)

We are to simply be like the complacent church, sitting sweetly in their pews each week, peacefully spreading good cheer.  Not ruffling any feathers for fear of ... whatever.  Because if we do, we might been seen as radical or not really a Christian because we dared step outside the norm.

Daring to write how things are, is radical.  It is outside the norm.  And it is why those who do that, are the most criticized.

So thank you.

You have helped to solidify the fact that women who behave, rarely make history.

And that to indeed make autism history, we need to NOT behave and go with the norm, the status quo. Instead, we need to be as justifiably angry as Jesus was when he turned over the tables in the temple in outrage of how it was being desecrated!

I am truly humbled by the dozens and dozens of comments I've received on my "Life with Autism" blog about "When Autism Awareness isn't so Cute".

And I am equally amused by those who feel it was "woe is me"....  "my life with autism sucks".

Actually though, at times it does suck.

But woe is me?  I think not.  Not me, not anyone I know.

If that is what people think, then they haven't a clue what "Life with Autism" is, and need to drop everything, sprint to the nearest family's house who actually has a child or two with autism, and spend a week.

The autism community is the strongest, bravest, most dedicated and driven community I've ever had the priviledge (yet unfortunate member card) of being a part of.

If the Christian community had half that drive and determination, there would be no one going to hell.

The misperception of interpreting reality to mean pity, is simply ignorance.

We do no one, let alone autism awareness, any favors by sugar-coating everything to the point that it's just natural and no biggie.

That we just need to deal with it and get over it.

We have and we are conquering it.

Every. Single. Day.

Because...

Autism. Is. Not. Natural.

Nor are the very real hardships that go along with it.

And I'll not ever sugarcoat that.

Ever.

So yeah, some may think reading about realism is merely a pity party, and that we are depressed, suicidal idiots who have nothing better to do that bring the rest of the world down with us, --- but you will be choosing to think that by yourself.

This pity-party has an R.S.V.P. of  Z.E.R.O.

There's a time and place to share the beauty of autism, and there's a time and place to share the realism of autism.

But never, ever, have any of us ever thrown a pity-party for autism.

We have no time.

We're too busy fighting it!

Woe be to that!

HOOYAH!

(smile)

When Autism Awareness month isn't so cute.

On this Blog, on my Facebook page, in any e-mail or conversation, -- I am very open and honest about everything in my life.  The good, the bad, and most often as others seem to take that honesty lately, - the ugly.  I simply know no other way to live.  Having a son who is non-verbal and who has autism, the real kind, not the cute Rainman kind, has taught me to be nothing less than real.  My son knows no other way to live, and therefore that's how I choose to live.

Granted, I make mistakes, do not live politicially correct, and many in my own Christian community probably frown on my forthcoming'ness.   Be that as it may.  Refer to opening paragraph for explanation.

And so for this month of April, National Autism Awareness month, I have upheld that standard of honesty, no matter how imperfect, no matter how.... inappropriate.

I'm just tired.

Tired of cutsie-campaigns for this month that do nothing but contribute to the crap.

And it makes me down-right cranky!

I'm tired of people thinking "Life with Autism" is something to just be aware of or accepted.

I'm tired of people thinking that if we all just "Light it up Blue" or "Walk Now" or any other cutsie-campaign like that -- the problem will be solved.

Well it won't.

You can light it up blue all you want, but it will take green to put that awareness into action. Not giving green by walking for those who light it up blue, but giving green to those local autism organizations and programs who actually help families all year round, and not just take from them and leave, one day a year.

This picture above can seem like a "cutsie" picture.   But it's anything but.  It represents what this month represents.  Autism. Awareness.

My husband and "other son" are at the Blue Lagoon in Huntsville, TX for Matt's Open Water Diving Certification. While I would have loved to have gone with them, I couldn't.

Autism awareness fact:  Many families have "other" son's. "Other" daughter's.  "Other" children. You know, those "other" children who are seen, who are there, but who are lost in the demands of autism.  Those who like my "other" typical son did for two solid years, which was to sit in the back of the car early mornings and late evenings, with his "cutsie cup of cereal" as we took the child with autism to special schools an hour away and special therapy appointments after a full day, etc.  The ones who give you Senior Graduation Announcements one day, causing you to sit there staring at them wondering how the hell that happened.  When that happened.  Guilt-ridden that finally in the life of the child with autism things have calmed to controlled chaos, instead of the uncontrolled chaos of the early years, and that you can finally spend time with that "other" child and get to know him. But then Wham! the Graduation Announcements stare at you as if satan himself is sarcastically sneering at you with a smile, saying ... it's too late.  

Autism awareness fact:  No respite, no trained attendant care provider to call upon for a day. And because of the non-cutsie brand of Autism Brandon has, it is not practical to take him with me, unless all I want to do is chase him away from the cliffs where he could fall in the water he's so enchanted by, and then drown.  Drown because I can't seem to teach him how to keep his mouth shut in the water, it's too powerful a sensory thing for him to 'feel' the water with his tongue.  That, coupled by the fact that he has spontaneous, unpredictable seizures, - and our every 45 minute "habit training" toilet training regimen, - and you see further why bringing him would not be fruitful. It would be nice to all be together, but then once again, the attention is on the child with autism, and the "other" child is just ignored.  Again.

Autism awareness fact:  My son is 17 years-old and still cannot be left alone.  He requires constant supervision. Every second, every minute, every hour, every day, every week, every month, every year, for his lifetime.  Parents with my son's non-cute kind of autism, might never get a chance to 'enjoy' empty-nest. 'Enjoy' their leisurely golden-years.... 

So, while it's just Brandon and I at home alone for yet another such weekend of "tag-team-family" -- I thought I would do some cleaning. Top on every family's list for a fun-filled weekend.

While I was downstairs cleaning one bathroom, Brandon apparently wandered to the upstairs bathroom that was inadvertently left unlocked.

Autism awareness fact:  Families live in perpetual lock-down.  Cabinets locked, Refrigerators locked. Stoves locked. Windows locked. Closets locked. Bedroom doors locked. Bathrooms locked. Windows locked. Doors locked. Gates locked. Pools locked. Garage doors locked.  That's not cute by the way, if you were smiling at that. We're not parents, we're freaking custodians walking around weighed down by ginormous keychains with keys to unlock everything.  Again, that's not cute. Try living your life wondering every waking moment if you remembered to lock something.  Try living your life having to unlock something to get anything. Try living your life with the guilt of being the one who perhaps in a moment of normal-ness which is not a luxury autism families can have, left the gate unlocked and the child wandered out and got lost. Or left the bathroom door unlocked and the bathroom and whole house was subsequently flooded.... (our house has been flooded five times now due to such 'normal' forgetfulness)

So when I heard the water running, I went upstairs. And the picture you see, is what I saw. Brandon, drawn to water, standing in the shower.  Now, while I did have a chuckle at that since I choose to laugh versus shoot myself, --- it was not in fact, very funny, or cute.

Autism awareness fact:  Children with autism are inextricably drawn to water. I'm not sure why, but the numbers of children with autism who have wandered off and drowned in someone's pool, a lake, etc -- are ginormous. Ginormous.

His non-cute brand of autism doesn't allow him the reminder to maybe take off your clothes first.  His non-cute brand of autism doesn't even tell him until after the third-degree burn because of his sensory dysfunction, that the water is on hot and will burn him.

Autism awareness fact:  Sometimes despite how many hours of Applied Behavior Analysis you've applied, they don't ever remember to take their clothes off before getting in shower.  So no, autism is not bad parenting, lazy parenting, or no parenting.  Sometimes despite how many thousands of dollars and thousands of miles you've spent on getting help for your child, your child is still autistic.  Better, but still autistic.  And that only covers those of us who do have a house to mortgage five times for those treatments.  Those of us who do have insurance and are lucky enough to have found the non-autism code that gets autism treatments paid for.  What about those who can't afford any intervention? 

His non-cute brand of autism doesn't tell him to tell mom if he wants to play in the water, so I can be there with him if he has a seizure and falls backward in that tub with perhaps water pouring in his mouth thus drowning him. We actually did experience that non-cute kind of autism a few years ago when he was playing in the backyard in the sprinkler and had a seizure, fell backward, where the water from the sprinkler filled his mouth, throat, lungs, - essentially drowning him.  The saving grace was God who allowed us to find him, do CPR, and revive him.

Autism awareness fact:  Autism is a deadly disorder.  I'm haunted by that anytime my son wanders from our locked-down house, anytime he's not supervised and could potentially run in front of a car he doesn't know to look for, anytime he has a seizure, and anytime he's near water.


So while I do think it is kinda neat to see pictures of all these buildings being lit up blue, it does little to highlight why we're actually doing it.  It makes this month of Autism Awareness seem nothing short of cute.

And autism is many things, but cute is not one of them. It's anything but special. It's irritating.  It's annoying. It's heartbreaking. It's enlightening. It's empowering. It's educational. It's Spiritual.  It's both heaven and hell.

Autism awareness fact:   Autism, again, is not Rainman. It's not special, nor is it a gift. The child may indeed be special in the blessing, the child is indeed a gift from God, - but make no mistake, the autism part isn't. It's not special to be the one home alone on a tag-team-family weekend, going stark raving mad by every light in the house being turned on and left on, by the incessant hummmmmmm of a child trying to re-set his internal rhythm disrupted by for him, seizures of the past week. It's wanting to sit down and watch your movie or read your book, but instead having to rewind Barney over and over. It's not being able to start, let alone finish a conversation with the voices in your head since there's no one else here to talk to, all because of the constant redirection needed.  "No hands when eating!" "Let's go to potty time!" "Turn off lights!"  "Shut door!" ....

Autism awareness fact:  Because of all the autism awareness facts listed above, and a whole slew more that I could add and add and add, it's no wonder why the divorce rate of families living "Life with Autism", is so stinkin high.  Heck, the thought has crossed my mind a time or two.  I mean really, for many, that would be the only way they get a break!  Get respite!  By the child with autism going to the other parent's house every other weekend!

 But no, thankfully an equally compelling autism awareness fact is that that which does not kill you, makes you stronger.  Same is true for many marriages.  The Autism, as in our marriage, highlights what truly matters in life. Making you focus on your faith, on your God, and on what a marriage is more than anything... a commitment.  For better or for worse. For richer or for poorer. In sickness and in health.  (Thank you Todd for honoring that commitment, even during the times when more than our love and my hotness, that commitment is what holds things together.)

I think that's why I love and fully support the National Autism Association so much.

They "get" autism.  They "get" what Autism Awareness month should mean.  Their Public Service Announcement for Autism Awareness is anything but cute.  It is provocative.  It is real.  It leaves you feeling like you were aware of a tragedy that you must do something about.  And while doing that, it shows us perhaps the most profound thing of all about this month:  Hopeism.

The Hopeism all of us in this tight-knit community of autism share.  The grit and determination that despite all the sucky and tragic things portrayed in that video, and that we each live with daily, there is hope.

We are not alone.

We will never give up.

It's what gets me through each day.

It's what puts into perspective this month of National Autism Awareness.

Please watch this video:

National Autism Association: Never Give Up

While the individual with autism may very well be cute, as my son is extremely ginormously cute, his autism isn't.

While you may think you are helping the cause by lighting something up blue, or wearing blue, or giving your green to that organization that's lighting it up blue, you're not.

Watch that video, and then find a local autism organization near you, in your community, who will use your green to directly help a family, again in your community, who needs some help, and the Hopeism that help provides for.


Thank you.....

Michelle M. Guppy