I have been trying to find the right way to frame this to make my point quite clearly without coming off offensively or invalidating to those whose journeys are represented by Mrs. Wright's descriptors. I don't know if I have achieved it, but here's my try.
Well, damnit (excuse my language but this bothers me), this is exactly how I feel about
how Suzanne Wright, co-founder of Autism Speaks treated my child and the subject of autism in her op-ed on the 11th. She took it upon herself to speak for me, about my son, to demonize him in a way that harms the hard work we have done. She took on a spokesperson role for ME and MY CHILD and used MY son's neurology (and perhaps even my own), to collect funds to FIX my alliterative "Single Family," which in our case isn't fixable because it isn't broken.
Like different types of Single Parent families, there are different types of autism and different types of autism families. We can't assume all children of single parent households are going to grow up and get divorced themselves. Or that they are damaged by poverty. Or that they lack some qualifications that will make them grow into fine, conscientious, productive citizens.
THIS is Autism:
A response to Suzanne Wright's inflammatory, fatalistic, and defamatory usage of the term "autism" to gather funds and get attention.
I get that Autism is growing.
I get that autism is hard. I know, I live it. I live it as an adult working on getting diagnosed and as a parent of a child on the spectrum.
I get it--as an outspoken advocate and a member of a community of parents whose life quality IS much more heavily affected than mine.
I am not denying or invalidating the difficulty for any parent--or person--with autism. (Or single parents for that matter).
Nor am I saying that there are not some families who aren't living devastating lives due to the side effects of autism and it's comorbid conditions.
But this isn't everybody's autism. Certainly, it is a description many families have worked long and hard to claw out of.
In fact, if you were to poll parents, you would find that while autism, in general can be very difficult for everyone involved, that this latest generation of kids getting the services and supports that they need are flourishing in the majority and that there will be many from this newest generation who have every chance in the world--assuming it to something that they desire--to go to college and have very productive existences.
And there are also plenty who, with benefit from the new interventions will have a much better toolbox to live satisfying lives, both dependently and independently.
While it is absolute fact that there are children whose way to learn we have not yet mastered; who do not receive the services from which to build the toolbox of emotional regulation, sensory regulation, and communication, whose families are fighting with borrowed energy for insurance coverage, waivers, respite, therapists, and waiting lists, that this does not encompass the entire autism SPECTRUM.
And while using the bigger number might make it easier to get attention, at whose expense does the lumping of a spectrum of abilities come?
-----
I am a huge proponent of awareness on many fronts, including research, action plans, insurance reform, educational opportunities, future planning, services and supports for both those with autism and their families. I have been where those families you speak of are, and while it becomes the normal for many families, there ate plenty of us who DO overcome the grief and despair and come to terms with the autism of their families in a way that brings them joy and satisfaction. I know the desperation, I do. I know the sleep deprivation and the exhaustion and the long term effects of physical and emotional stretching. I know the stress. I know the depression. I know the anxiety. When we started the journey with our son, it was our norm. I get that we need to address this.
I am not, however, about to offer my son's dignity and value to the sacrificial altar to be imagined by the whole of the world he has worked so hard to share, as a burden, a "them" not worthy of "us," a family breaker, a reason for DESPAIR.
I advocate for all families with autism. Including those to whose reality Mrs. Wright's words refer. But I won't sell my son short for her to use fear mongering and sensationalization and leave his reputation and hus future in tatters for her to make a point and raise some funds. No, I won't allow her to rabble rouse the entirety of autism and risk the opportunity for my son to live an integrated and satisfying life--he (and we and his incredible team) have worked too hard to get this far for us to risk the credibility of his being and his voice.
I. Will. Not.
I won't do it.
As a parent whose job is to protect my son, I REFUSE to abide it.
Three million children aren't lost. And to Autism Speaks, the largest organization to lobby for funding and awareness of autism, I do owe great thanks, because their funding has paid for research into interventions that have made sure that a whole slew of this three million kids are very, very much present, among us, with voices that need to be heard. But I won't pay them back by forfeiting respect and dignity for my son and myself and others like him.
So In response to Mrs. Wright's highly offensive speech:
Mrs. Wright, you say...If three million children in America one day went missing – what would we as a country do?
--First, Mrs. Wright, my son is not missing. In fact, I know exactly where he is. His is physically in his bed, rolled up burrito style with all his favorite stuffed animals. The rest of him--is in my heart. This kid is our world, our heart, our everything. I have known where my son was all along. The problem I had was teaching MYSELF how to teach someone else who learns very differently from the majority of the population so that we could connect on that higher level of communication. But always Mrs. Wright, he has been very, very present in this world and in our lives. Our kids deserve much more credit than you are giving them with this op-ed. Isn't the very research Autism Speaks is doing proving to us that our kids are more aware than we credit them for? That they understand more than we previously believed? That we should "always presume competence?"
You go on to say ...If three million children in America one morning fell gravely ill – what would we as a country do?
--First we'd start by clearing up this statement of absolute hyperbole in respect for the folks who do resemble the description so that we don't make light of what it means to be gravely ill. While there are a myriad of co-morbids (I have often heard the charming term 'Alphabet Soup' to describe the acronyms in the diagnoses), a majority of children with autism are not "gravely" ill. My son, like many others with an autism spectrum disorder may have a bit of his own alphabet soup going--starting with a low immune system. So do I. I do get sick a lot. It's not my favorite thing. So does my son. And we both have anxiety and a little bit of OCD. We're both kinda crappy sleepers. But my son IS NOT "gravely" ill. This isn't AIDs. This isn't cancer. This isn't an extremely antibiotic resistant strain of Staph occurring during open heart surgery. And while there ARE individuals with autism who reserve the right to be called gravely ill, having lots of allergies and asthma and gastrointestinal issues and being sick a lot isn't exactly our idea of gravely ill--so please, please don't make it out to be something it is not. It dors a "grave" disservice to the credibility of what will some day become adult citizens. What sort of job would like to hire a "gravely ill" individual? And as one day my son will very well be in the job market, we don't exactly want autism to automatically mean "terminally miserably disgustingly sick," now do we? That's a pretty irresponsible way to plan for autism's future....
You reiterate again ...Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.
--I probably don't need to reiterate this, but I will, just to be sure you understand it. My son and I have not lost touch. In fact, with proper early intervention, with love and attention from home, with the confidence he has gained from seeing the fruits of his hard work to make connections, he has grown incredibly integrated. I would even go so far as to say he is precociously integrated. He can translate his inner dialogue outward in a way far more advanced his chronological age. He can advocate and does advocate for his needs. He speaks up. Talking to my five year old is like talking to an old soul. While his ability to communicate his understanding of the world might seem limited to an outsider, those who have learned his way of voicing things and who take the time to listen to him and develop an understanding for his "culture" know that his understanding of the world he lives in is quite advanced. He is in possession of strong character and moral fiber. He is very much an individual of value and substance. No, there is nothing lost or and there is no disconnect between my son and this world other than what comes from the ignorance of outsiders or is born of the unfairness of stereotypes. And to say that he is "out of touch" or "lost" denies his very substance, the very character, the uncommonly beautiful insight of my five year old boy. I would not dare let any Joe off the street impugn my son's absolute worth. And I absolutely, whole-heartedly will not let my son be denigrated by those who are supposed to be advocating for his very worth.
You accuse spectrumites of destroying families here....We’ve let families split up, go broke and struggle through their days and years.
First, let me get to the absurdity of this statement in the context of trying to recruit individuals and people to serve those on the autism spectrum. If these "kids" are soo awful, who is exactly is going to sign up to work with them loke we need? Demonizing them only worsens the gap between supply and demand. A high school grad who is not personally touched by autism isn't going to say after reading your description of these "home-wreckers," "Gee, that is EXACTLY the population I want to work with. Let me go to college for THAT." And if they do? Imagine all the poisoned minds who will treat kids with autism as the proverbial "outside dog" to the veterinarian. You know, the one that you have, but you don't really sink the dedication into THAT dog because its JUST the outside one anyway...the one who doesn't really need to be wormed or given Heartgard because its an outide dog thats gonna die young. So how does THAT fit in the National plan, Mrs. Wright?
There is no doubt that autism can be overwhelmingly stressful. That there are consequences to not sleeping for years. That autism costs money. But if it were only autism that caused these things, then this statement wouldn't seem so blatantly blameful and unfair. My husband and I are CLOSER than ever before because we had to learn as a team how to teach our son to build his proverbial toolbox. We talk about everything because we know that we do have to be more attuned to our son, his needs, his education, his future, his emotional and physical well-being-- and our own boundaries, needs, and well-being. Our strong marital foundations have more to do with our own toolboxes to handle stress, to communicate, and the amount of dedication we have as adults than it does to autism. We could have gone bankrupt in the recession and lost everything and the stressful time could have been a breeding ground for our commitment to grow or for our commitment to one another to whither. Autism, alone, is not an indicator of whether a marriage will survive or fail. The toolbox that adults bring to the marriage--and the task of parenting--makes the greater difference.
Financially, autism does have a distinct impact; of this the correlation is direct. Given preference, I would not have chosen to submit to being a stay-at-home Mom. We are all good at certain things and being at home all day is not my individual strength. I stay at home because my son was blessed to get into a magnificent autism program. There is no bus service to his program. It's a few towns away. He is also dual enrolled in a pre-K setting where I drive to the far reaches of the county. Our fuel expenditures frankly suck and being a college-educated chauffeur doesn't exactly pay like a career would--this fact culminates in a lot of lost income. And had we been unlucky enough to not be close to a Demonstration Program that is funded through the US Department of Education using the same funds that would pay for our son to attend regular elementary school? That kick would be far, far, far, far worse. But you know what? My son could have developed a rare form of leukemia and I could be paying for plane tickets and hotel stays to bring him to a cancer hospital 500 miles away. Our insurance could have maxed out millions ago and I still probably would not be working. It is a difficult reality, that when in taken perspective, is not entirely an autism reality. It's just reality. What it DOES equate to is that autism alone is not the harbinger of evil. A child's autism and a family's stress is worsened by the fact that some insurances will not pay for therapies, that some schools refuse to work on the need of some of our kids, that injustices abound of being stereotyped by a label rather than viewed with humanity; the lack of supports and services can affect the physical and mental health of the entire family. But these are outward, social issues. These are the result of a one-sided world working to catch up. The difficulties related to autism are far more complex outside of the autism than managing the autism itself. Autism is not in and of itself always the end all/ be all you have chosen to make it out to be.
Our son does not give us reasons to despair and although we don't have the income we wish we did and I don't have the job I would prefer and we have had to work a lot harder than other parents to raise our son --nothing brings us MORE pleasure as a family as the little victories we cherish with our son's development.
And you undo integration here ...There is no national plan to build a city for 500-thousand people....
And there shouldn't be. Because my son is very much a part of OUR city. Because he's a citizen with the same rights as every other citizen. Is this supposed to be some sort of Institution Megapolis?? Isn't the idea of mainstreaming and "least restrictive environment" to respect that we are apart of the same HUMAN spectrum? No. Just. No.
...Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help....
My son worked hard at learning to dress. But he CAN dress himself every morning. Maybe his wardrobe choices aren't as varied as his Neurotypical counterparts--no long lines of buttons, no scratchy tags, no rough textures, no shoe laces--but he can dress himself very well. My brave boy also worked very hard to learn to use a spoon and a fork. And he wields them bravely trying new foods that he never would have touched before. And he's learning to cook. And make sandwiches. And juice vegetables. And while potty training is in progress, he has MADE progress, thank you very much. He might not be good at some things, but he can function already quite well developmentally and independently at many things. To undermine his hard work and the hard work of others like him so dismissively, to undermine and under emphasize what he has learned to do and what he can learn to do is insulting, hurtful, to say the least, and if he were to hear himself talked of like this, it would even be downright destructive to his sense of self-worth and accomplishment.
-----
I asked my son earlier today about how he felt about himself and this is what he had to say:
Me: You know you have autism, right? How does that make you feel?
E: I have a rainbow brain and it gets healthy when I eat fish and it thinks about superheroes and monster trucks and goes *bow pow bow* [using hand gestures to intimate that it "kicks butt"].
Me: Do you think you are good or bad?
E: I am a good boy. I make good decisions. And so does Lupe [his favorite stuffed lobster].
Me: Autism can make some things hard. Does it make things hard for you?
E: I don't (meaning can't) have casein and casein is in ice cream. But sometimes I eat yogurt. Aunt J doesn't eat ice cream because it has lactose but she don't like yogurt. And S [his cousin] doesn't eat chocolate because it gives her belly-aches. And Mawmaw can't eat too much seafood, either. [makes a silly garbled full body gesture at being sick and then giggles]
Me: So you wish you could eat ice cream?
E: [wiggles brows to nod yes] I can eat ice cream with P [a classmate] and he would say "thank you for sharing!" I'm a good friend! I am smart! And Lupe thinks I am really nice when I share with T and H [his classmates].
Me: What do you want to be when you grow up?
E: A soldier on a boat [a nod to my Father-in-law who is former Navy] and a chef. And I want to work at N[local technological center] with Daddy making the internet safe!
Me: Good job, buddy. You always rock.
E: [wiggles brows to nod yes and flicks his pointer at me]
your
Mom rocks.
-----
Part of this plan we need involves things like valuing the abilities of our spectrumites enough to see them as employable, marketable, valuable members of the American Workforce and using language that reiterates that, for at least some of the spectrumites growing up, they are competent in ways that CAN serve a functional, productive role in society. Part of that plan is to advocate for meeting the specific educational needs and styles of learning of those with autism. Part of that plan is to ensure that individuals with autism have every right as the next person to healthy, holistic treatment, including but not limited to a healthy sense of self worth. Part of that plan is to make sure that their voices are an understood, respected, and worthwhile component of the overarching American community. (And right now those voices are vehemently disagreeing with Mrs. Wright).
Exactly how are we helping our spectrumite community become valued members of the American (and the Global) community if the very organization who appointed themselves as the defenders of said community has taken to defaming them, calling them burdens, painting them as parent parasites, life leachers, happiness killers, and breath stealers? If the images we paint for them are hopeless, despair mongering, miserable excuses for existence?
You will have to excuse me if I find myself a little confused at how someone who paid themselves almost a half a million a year to push the agenda of the autism community, to advocate for their needs, and to increase the quality of life for the spectrumites of America just chased off their last [brilliant] spectrumite from their entity can still call themselves "AUTISM Speaks" and maintain their dignity? If you are doing it because there is money to be made in marketing treatments funded by Autism Speaks, I can understand the business practice at minimal. We need the investment towards improving the quality of life and health of our spectrumite community. In that case, manage the investment, leave the P.R. to the spectrumites. But an organization that consistently pushes the platform of semantics being a product of our beliefs and evidence of our attitudes (
as evidenced by their backing of person-first language and the
condemnation towards the frivolous and laissez faire attitude towards the "r" word) would put my son's dignity--and let's face it, his safety
since the unwarranted fear towards autism and violence swirl around our community since events like Newtown--is irresponsible, incomprehensible, and blatantly hypocritical of all it does and SHOULD ethically stand for!
Its like being an organization entirely composed of men that promotes equality for women and gendre respectful language saying "Women have it rough in this world! They bleed themselves ill every month and they bear body destroying babies! They live an existence of suffering and misery and their menstration destroys families and their child-birthing tendencies bankrupt families! Let us advocate for them to get jobs and be spoken of respectfully! Let's support the men who deal with women and their disgusting bloody ways!
How long would this go on begote women screamed "Foul!?"
Our spectrumite individuals are calling B.S. But the same organization set to promote them is the same one discrediting their voice.
I am not exactly a marketing exec. But if I were to have written an op-ed introducing our mission to enncourage a national plan, it would be a bit more integrated, fair, and antinihilistic. It might go more like this:
This week is the week America
will fully wake up to face the truth about autism.
What would we do if an entire population of children were being marginalized, quietly ignored, whose basic rights and needs being dismissed?
Today, three million children in America are diagnosed with a neurobiological disorder that can affect the abilities of children and adults to communicate, to socialize, and to adapt to change.
This neurobiological disorder, not to be confused with a mental disorder, is a spectrum of characteristics and manifestations. The incredibly fast growth of diagnoses is far exceeding our plans for how to treat and plan for an entire population of children and adults.
Autism--Three million children who have a myriad of abilities and needs.
Three million children—compared
to just a few hundred thousand a decade or so ago—cramming the offices of
doctors, nurses, IEP team members, Occupational, Speech, and Physical therapists, who need to see
qualified psychologists, psychiatrists, who need help with allergies, with gastrointestinal
symptoms, who need services to learn to meet their basic needs—needs in such
complex array we are only now beginning to understand.
We would call out the forces
and we’d pull up our bootstraps and we would
GET THINGS DONE. We would climb the highest mountain and we
would make sure our voices were heard.
We would bang down the doors of the colleges and we’d say “why aren't you ready?”
We would demand
funding for research and we would demand it ASAP!
As a
nation, we have a responsibility for hundreds of kids being diagnosed
every single day
—at a rate of 1 in 54—
to gear up and get into the action. We would stop standing by with gaping mouths
and we would step out of the darkness of denial and we would mobilize.
For the next three days, we will do just this—we will call out the force, we
will pull up our bootstraps, we will raise our voices, we will bang on the
doors and we WON’T be denied! We will
demand a national response!
No more.
Tomorrow in
Washington, D.C. we will gather an unprecedented number of bipartisan
officials, congressional leaders and experts in every area of autism for a
three-day summit. We will demand a national response.
Don’t
our families deserve it? Don’t our Spectrumites deserve it?
America has always been about its great people,
people of all colors, shapes, sizes, and even neurology.
Yet,
we seem to have forgotten our children - and our children are our future.
Each
day across this country, roughly 6 million moms, dads and other care-takers I
mentioned wake to the sounds of their son or daughter bounding through the
house. That is - if they aren’t already awake. Truth be told, many of
them barely sleep—or when they do – they somehow sleep with one ear towards
their child’s room—always waiting. Waiting to know that our children can sleep peacefully about their own prognosis. Waiting for when parents can have the answers—waiting to hear that
the futures for these kids have some certainty, waiting to get the services and
supports and respite needed to meet our childrens’ and our families’
needs, waiting to hear if insurance will cover this proven new medication or that important therapy or to meet the needs of our population. Needs that aren’t being met, are
marginalized, and in return, our children’s potentials—the potentials of our
citizens, our nation’s childrens—marginalized, undervalued, underdeveloped, under-attack
from those who devalue and dehumanize the potential of those with differences.
This
is autism.
On
the good days my hard working parents of autism out there – 70-million
around the world – see the sun shine. They notice the brilliant colors of the
autumn leaves. On bad days, they are depleted. Mentally.
Physically. And especially emotionally.
Maybe
they have been up all night caring for their teenage child who’s having a
seizure.
Maybe they are up yet again changing the sheets because there’s been another
bed wetting accident.
Maybe
their child has been trying to bite them or themselves.
Maybe
they can’t afford the trip to a doctor specializing in autism.
Maybe
there is a waiting-list for ABA, speech and OT.
Maybe
their insurance won’t pay.
Maybe
they don’t have the money to pay a special lawyer to fight for school services.
But they do it all—they do it
because they love their children and they see their potential and they know
that they are worth doing for—worth fighting for.
Yes, This
is autism.
If
any of this sounds familiar, you know autism. And if you know autism, you
know we are looking at a monumental crisis for serving the needs of an
exploding population and the families/caregivers of this population. And at current, we have no national plan to meet those exploding levels of need.
What
I described above is really just the beginning. In the next ten years,
500-thousand Americans with autism will be growing up and out of the system
which means they will no longer qualify for the services they rely on every
day.
If we aren’t maximizing our children’s’
potentials, what are we doing for our country?
How are we going to care for country’s needs if we can’t care for the
needs of our individuals?
If we don’t start now, what does that mean for our future?
If we don't have a plan, how do we expect to succeed?
Today in America, there is no national plan to create jobs, to serve the educational, occupational,
physical, and mental health needs of an exploding population.
Just what do you think happens to all of
these kids? |They grow up.
They grow up and without their toolboxes having the proper tools for survival, they face a crucial uncertainty.
Who will care for these adults when their caretakers pass away? Who will support their day to day efforts? Who will they turn to when they are sick, are at risk for being taken advantage of?
So let’s dial back a minute
and consider the babies being diagnosed with autism every day in this great
country. Do we have a plan for them? Are they all getting the same medical care
and therapies across the board? Are we doing everything we can to give them the tools they need to guarantee they get a
fair shot at a productive future?
--Because if we aren't then with our irresponsibility, we are failing ourselves, our country, and a
population of American citizens who deserve the same sort of opportunities as
every other American in this country--
Yes,
we know children from minority and lower income families are not getting
diagnosed as early as they should be, so their treatment begins later which might
decrease their chance at progress. This
shouldn’t be the case.
How
about in school? Is there a national curriculum for our children?
Are we encouraging teachers around the country to share with each other lesson
plans and methods that work for them? Is there collaboration? Are our teachers getting the proper education
and support to implement much needed interventions to maximize our children’s
opportunities for growth and development?
Are our parents being
supported, understood, valued, and listened to?
Are there needs being addressed as caretakers????
Some, you say? Maybe? Marginally?
We have no national plan.
Yet -
our future depends on it.
Financially,
we estimate it costs 2.3 million dollars to care for one person with autism for
their lifetime if they must have 24/7 care.
But
money aside, these are our children. Our
responsibility. The late scholar Neil Postman once wrote “Children are
the living messages we send to a time we will not see.”
What
is our message?
We
can’t even craft one – without a national plan.
Close
your eyes and think about an America where three million Americans and counting
largely cannot take care of themselves without help. Imagine three million of
our own – unable to dress, or eat independently, unable to use the toilet,
unable to cross the street, unable to judge danger or the temperature, unable
to pick up the phone and call for help.
This
is a national emergency. We need a national autism plan – NOW.
We
are heading to Washington with a call for action on a national plan – NOW. We are asking our leaders to
respond to autism with the urgency it deserves – NOW.
Washington
– here we come – because we need to help our families – NOW.
http://m.youtube.com/watch?list=PL39BF750F26473E2A&v=CabAn6yeJXU&desktop_uri=%2Fwatch%3Fv%3DCabAn6yeJXU%26list%3DPL39BF750F26473E2A Autistic Self Advocacy Network
