It's been a while since I've spooned up a goodly dose of medicine to HuffPost friends. Today I ask you to open wide, say ahhh, bend over and cough all at once.
Last month I was in Dallas speaking to a wonderful group called Metrocare that provides services to low-income families with children who have developmental disabilities. I flew in a airplane all by myself. I was picked up at the airport and whisked to my luxury accommodations in a car that costs more than my annual income. I was ensconced in a room with terry robes and slippers (in case I had the desire for a massage or other treatment in the spa downstairs) and a mini-bar (didn't touch it) and a bathtub my Bella would have sworn was her very own indoor pool. I was living large, my friends. I was even... on TV:
Days after my return from a luxury business trip (a fleabag roadside motel with an "HBO" sign blinking in the office would be luxury to me at this point), I picked up this form (below) at Probate Court in my town. What is it? It's a form that enables my husband Mark and me to take away our daughter Mia's adult rights when she turns 18 in December. You read that correctly.
We have to petition a judge to take away her rights as an adult so that we can make her medical, legal and financial decisions because thanks to her autism, she is not able to make safe choices for herself.
She was a tot who could count and read before 2. And THAT, my friends is the reality of autism for thousands upon thousands of American families. It's like Alzheimer's for a lifetime in terms of safety, care and needing supervision. Except instead of an exhausted adult taking care of the "sandwich" of parents and kids for a few years or even decade of Alzheimer's, it's exhausted parents taking care of their adult children in the endless buffet generation of autism.
There's a spot on the form for "standby guardian." That means the next person in line after Mark and I die. D.I.E. Whom shall I appoint? Her sister Gianna? Nope, she has autism and her petition date is in 2014. Her sister Isabella? Nope. She has autism and her petition date is in 2018. Do you have a standby guardian you can lend us? All it requires is 24/7/365 love, care, attention, physical presence, complete ability to make every decision and about 1,000 other responsibilities. No sweat!
I held my emotions in check as I stood in the doorway of the Probate Court judge and asked for the paperwork. When the kindly town hall staff member said to me, "We're processing paperwork for two other -- " I lost it. Tears slid down my cheeks. "I know," I said. And I told her the names of the boy and girl who are turning 18 within days of Mia. We celebrated their 16 birthdays together at Bounce U. Three Moms, three Dads, all standing around in our socks in a jumping castle joint laughing through tears about how we should have been at the local car dealer negotiating a bulk discount on Honda Civics.
A favorite waitress from a local restaurant whispered in my ear a couple of weeks ago, "My son was just diagnosed with autism." He has seizures and severe aggression. He's not even 3. She deserves more than what we "old timers" have put up with for so long. We need treatment. We need cure. We need prevention. Look, if you do not want prevention, treatment or cure for yourself or your own child -- that is your right. I respect your point of view and I will be sure to fight so that you can have an exemption to any and all of it. (Insert irony emoticon here.)
To those parents who have forged the way before me, I say thank you. Barbara Fischkin and Chantal Sicle-Kira -- and so many others who shine the light on a dark path for us. I have only harsh words for those in the media, government, doctors's offices, universities and on blogs and sites who'd have us believe we are bad parents for wanting to wipe away our children's autism to reveal the child underneath. Who think we are simply ignoring the good and the gifts of autism. My girls are gifts. My girls are good. Their autism is a noose around their necks. I've no patience for those who might tisk tisk and beg for acceptance and placate donors with "awareness" and fund evermore genetics studies that lead to nowhere while putting up barricades for those of us who will always have hope for the basic goals of every other serious diagnosis in America. Treatment. Prevention. Cure. Those who do not acknowledge and fight for change for the real struggle of families from coast to coast can kiss my polenta.
I cherish my Mia. My firstborn. A child who was not born with autism in 1994 and who at 18 will become a legal child for the rest of her life. Mark and I expect to take care of our girls until the day we die. In our hearts we are proud to stand by them come hell or high water. We are mentally prepared. We will never be financially prepared. I train in a dojo up to six days week to stay physically prepared. We will never desert our kids.
At the same time, we should never have been placed in this position. And more of us need to scream that the floodgates are officially open and the high water is coming. Fast.
The epidemic of autism is growing older and we are ill-prepared for their needs. Until we find the cure for parental death, we'd best start looking for one for autism.
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Because you said it in a comment that you made on...the first page, I believe...these kids, even the ones with severe autism, have the right to what they need for a life that's happy for them on their own terms. That can be hard as hell for families to ascertain for kids with severe disabilities, let alone put in place without the help of trained professionals. You, as the people who love these kids and want the best for them and who are trying to plan the best possible life for them, need to *insist* to those in power that it's integral that these supports are provided for you and your families.
Though I wouldn't deny that my parents could have used the information/help, I think I was lucky that there was no official "Aspergers" in the 70s. What kind of messages would I have internalized about myself reading in blogs and media that I was broken, diseased or needed to be cured?
As it was, people told me I was too sensitive and they ALL tried to change me to fit their world. But I saw judgment and unawareness - so I grew up to try and change the world instead. I never could have done that w/out my autistic brain. I don't mean to deny your experience - but please know that those people you want "kiss your polenta" are also on their own journeys with Autism... and it's not all bad.
I have a daughter with Asperger's, and while more capable than yours may be, we'll always worry about her ability to properly take care of herself. But I thought you might want to know about a non-profit organization here in Austin that's starting the first job-training classes and placement services for young adults on th spectrum. (First -- full disclosure -- I'm helping them with pro bono public relations.) It's called the Austin Dog Alliance (dotORG), and they've been using therapy dogs to teach social skills to kids on the spectrum very successfully for a couple of years. Now, they're starting classes to teach dog-related job skills for positions such as vet tech, dog handlers at shelters, etc. As far as we can tell, this is the first time this has been tried. The Texas Department of Rehabilitative Services (DARS) has already agreed to pay for their participants to take part in these classes in the next few months. You and your readers with kids like ours should check out their website and track their progress. If anyone is attending the Texas Autism Conference on Sept 13, they can attend the Alliance's talk and demonstration on using dogs to teach social skills. Good luck to everyone. There IS hope.
and we can't think about what happens to our child who will be a child his entire life when we die. It's been 10 years now (He's 12). At first you think if you do everything right you can "save" your child like some of the success stories. Then it sucks even more that you can't, knowing that you just must've done something wrong, not worked hard enough, not tried enough doctors or therapies or supplements or diets or cures... Yes. It just sucks. And then you die. Oh my, these are dark thoughts. It's an outrage that nothing is being done to prevent it. To stop the obvious cause: too many vax too soon in infants lives. Where there's smoke there's fire. We know it and they know it. Autism is way worse than the diseases vax supposedly prevent.
The problem of caring for adults with autism is approaching our doorstep apidly, and we are not prepared for it. What will we do in the coming decades, when 1 in 88 adults is autistic?
Lifetime care for a person with autism with intellectual disability is estimated at $2.3 million, $1.4 million for autism without intellectual disabilities.
It would be wise to begin pouring real resources into "prevention.treatment.cure." However, I fear that there are environmental and other factors that may be causing autism that our nation (even our planet) is not prepared to address, so, like climate change, it is preferred that we not really get serious about addressing underlying causes.
I recall a recent radio story about advances in genetic testing for autism. The person being interviewed spoke of prenatal testing for autism that could cut the rate of autism similar to that of Down's...while he spoke eloquently, I realized what he meant. Currently, ninety percent of pregnancy with a fetus with Down's is terminated...it is expected that people will do the same thing when autism can be predicted.
This thought triggered a wave of grief...what if "predict and terminate" becomes the solution instead of prevent.treat.cure...?
There is no person trapped "underneath" the autism....just me, autistic me.
And the only thing that feels like a noose around my neck is constant infantilization and devaluing of autistic lives.
The ability to type and form opinions says nothing about my level of functionality nor my (in)ability to complete ADL's. Even the author of this article recognizes that:
"She was a tot who could count and read before 2. And THAT, my friends is the reality of autism for thousands upon thousands of American families."
And this is where I direct you to another HuffPo article which is an interview with one of these individuals you would term "low functioning" who also happens to be an autistic advocate and a published poet:
http://www.huffingtonpost.com/ariane-zurcher/autism_b_1871276.html
I'm aware of the institutionalization, the abuse, the murders. It's horrific, all of it, and it needs to end. I agree. But I don't think it will end so long we continue depicting autistic people and children in the way that this article has.
1. Being able to express oneself and being "afflicted with the medical condition called 'autism'" are not mutually exclusive.
2. Language matters. To many people on the Autism spectrum (which, for the moment, includes Aspies and PDD-NOS and others), our condition is part of who we are. So when someone says, "Autism Sucks", of course we're going to personalise that. What we hear is, "YOU suck", "YOU are a burden", "YOU should be eradicated", etc.
3. The real irony here is that every time you dismiss an Autistic adult's point of view with "You're not like MY child! You can talk!", you are actually undermining *your own child's* ability to ever, quote, "write about the wonders of neurodiversity" as you hope he might. Because if and when he does, he'll be dismissed by parents who think he can't possibly understand since he wrote something on the Internet. Y'know?
I know non-verbal autistics who cannot tolerate the touch of water, and they do not care for your excuses. They know Autism cannot kill, and they are the ones who taught me to disabuse myself of that lie. Use the spectrum card all you like, Autistics cannot care anymore. They also tell me of when they ran away from their parents by choice. Of course you omit to consider the possibility that any Autistic could do that.
Autism is a spectrum of experiences. You said so yourself. For some of us, it is very much part of our identity. Not our *entire* identity, mind you, but enough of an integral part of who we are that it matters. You don't have to feel the same way. That's fine. We can still work together to get better outcomes for everyone - EVERYONE - on the spectrum. Believe me, no one understands the seriousness of the diagnosis better than the people who actually live with it - Autistic people.
Wishing you and your family well also.
I hope your children do find what help they need, but as long as what I am and what your kids are, are both called Autism then there is going to be a conflict of interest between Autistics who are made to suffer and Parents who want to end their torture.
" It is a serious, real diagnosis - or it wouldn't be in DSM at all"
That did not stop childhood bipolar disorder, and the DSM is gaining a big reputation for psychiatric fraud. I think Autism is just a word, a lie that sets people against each other. There is a solution, but it aint black and white.
Peace be upon you, as a muslim might say.