That’s it. That’s all I got.
That’s it. That’s all I got.
These are REAL comments on Autism Daddy’s facebook page concerning Jerry Seinfeld’s recent disclosure that he might be on the autism spectrum:
Melissa P: “As the mother of a very high functioning Aspie, I was very offended by Jerry Seinfeld’s self diagnosis. I saw his stand up once and saw beneath the veneer of his comedy an arrogant, elitist prick. His “social awkwardness” comes from his elitist viewpoint atop his magic money empire which prevents him from connecting with an “average” person. It doesn’t make him an Aspie, it makes him an a-hole.”
Karen D: “…gee what I wouldn’t give to have my essentially non-verbal son have a hit tv show for over a decade, make millions, talk casually on Letterman and Leno, do stand up. It’s like night and day, cookies and carrots, hard and easy…yeah they have things in common but they are so far from each other it’s hard to see their commonality. An when you’re struggling it’s hard to empathsize with a very successful, rich, funny star saying he’s got troubles too.”
Jessi F: “I generally take issue with adults who self-diagnose – not saying adult dx doesn’t happen, but go to a professional & then I’ll believe you. Seeing anyone quirky/different as being on the spectrum annoys the everloving shit out of me (my kids are relatively high-functioning, but have OCD, anxiety, and major depression to go with. Fun times.)”
Shannon N: “I’m really conflicted about this, because I think many people can see particular traits that are present in autism in themselves even if neurotypical. Maybe there’s more to it than what he said in the interview. It just seems that lately anyone that finds themselves to be a bit quirky, or not extroverted, is identifying as autistic.”
Just out of curiosity, how many of the people who form an opinion like these above have spent any real amount of time with the folks they are judging? And exactly what data are they using to make these judgments? Also, when they are out in public with their child with autism who might be having a meltdown, or if they are themselves having a meltdown, do they whip out the psych eval that proves such to show passersby? WHO ARE YOU SO ANGRY WITH??? It is not, and never has been, a competition along the spectrum of autism. Yet that’s a complete lie because it actually has always been a competition because no matter who you are as an individual with autism, you are labeled as either “high-functioning”, “low-functioning”, “self-diagnosed”, “non-verbal”, or some other twist of vocabulary to make sure you are put in your place. Why? God only knows. It serves NO PURPOSE whatsoever. In fact, not only does it create inappropriate limitations on some, but it creates inappropriate expectations on others. It creates crippling animosity between the “levels of functioning” on the spectrum, especially between parents and caregivers. And here, in the case of Mr. Seinfeld, it paints a contradictory portrait of what autism for a man “like him” should look like. When convenient, parents and caregivers, and self-advocates will use this common description of autism: “There is no one autism.” However, they quickly rescind that philosophy when met with a high-functioning celebrity with autism – then the adage simply doesn’t apply. Out yourself as gay? Sure. No one claims that without being brave as hell. You’re going to face either abject persecution from family, friends and society, or if you’re extremely blessed you’ll only live with the daily discrimination our society as a whole still dishes out. Got cancer? No one jokes about having cancer so you’re likely telling the truth. No one starts a judgy facebook thread on whether or not you really have cancer and certainly no one gets into public arguments about whether or not your one malignant mole is as scary as full-on liver cancer. It’s CANCER. Everyone freaks out and offers to bring you a meal. BUT AUTISM OR ASPERGERS???? HOLD UP. Everyone suddenly decides to take to the streets and online minefields to debate that shit and ignore that you just opened your soul for the world to see. Statements like: “Everyone is on the spectrum somewhere, we’re all a little quirky. No big deal.” Why should they treat you with compassion and empathy? Why acknowledge that you have come forward displaying what you believe or know for certain is a lifelong condition of your very being? Apparently because you chose this and the autism community simply disagrees. This is AUTISM. It was there from birth. Imagine the host of feelings for an adult to finally find the answers they have been searching a lifetime for! When I discovered my autism, first through self-diagnosis because HELLO, you have to start somewhere – I was relieved and thrilled to have answers! I’m not 3 or 6 or 17 years old. I’m an adult and I had to figure it out for myself. Then I had to decide if I wanted a formal diagnosis. But let’s be honest here – Mr. Seinfeld is pretty damn smart. He knows a lot of smart people. Are we really going to hold him to a clinical diagnosis to “claim” him as one of our own? Do you question his ability or motive at 60 years old to understand the diagnosis he is seeking? Do you really think this man went public on the evening news without some serious discussions? John Elder Robison is a dear man, respected member of the autism community and was “casually” diagnosed by a physician friend as an adult. He didn’t seek a formal diagnosis right away – he didn’t have to! Only later did he do so in the course of participating in clinical research. So why do we judge one and not another??? Is it because this is a career comedian who made a ton of money? Is this the disenfranchised autism “community” displaying its jealousy of “high-functioning”? Of fame and fortune? Why are we not throwing the entire weight and love and support of the autism community towards Mr. Seinfeld’s brave announcement AND TO EVERY INDIVIDUAL WHO SEEKS COMMUNITY AS AN AUTISTIC? And we still wonder why this “community” of autism cannot pull itself together and get anything done. It’s so important that we set the example for ALL individuals who think they may be on the spectrum that WE WILL WELCOME THEM!!!! My sincerest blessings to Mr. Seinfeld for his bravery on this journey to self-discovery. My prayers to all individuals who struggle to be accepted and supported on their journeys, whether children or adults, whether diagnosed or in the process of discovering their autistic roots. You are amazing and you are loved. And there *is* a community waiting for you that will accept you and love you for everything you are. Never give up. ***Friendly reminder, Folks – Please allow time for your comment to appear unless it qualifies as hurtful, hateful, contains inappropriate language, etc. This is a place of acceptance and safety. While I welcome opposing viewpoints, we all deserve respect. Thank you.***
It’s hard to believe this breakthrough in evolution has been happening right under our noses and yet we just didn’t recognize the gravity and awesomeness of what is really taking place at this critical time in human history. We, the autism community, have been fighting and bullying each other over this label and that, over causes and cures. Folks are terrified of the “tsunami of autism” coming due to the exponential rise in prevalence. But all of that mess is meaningless because autism is the cure.
What?! you say? Oh, yes. Let’s explore this phenomenon of human evolution together. And let me preempt the expected onslaught of commenters who think I am crazy because some autistics are not possibly capable of being evolutionary supreme beings – mountains of science has already proven that an average of 90% of human communication is nonverbal. If you think that autistics who don’t speak are not valid entities in our progress through evolution, you should brush up on your own 90% and recognize that autistics are overachievers in this category who we could learn a crapton from.
First, what is autism? Not the clinical definition, but what autistics actually experience in daily life. Anyone?
Well, it’s great in a lot of ways when we don’t have to bend, twist, cajole, script, or freak out to try to fit into the neurotypical world. It’s great when we can be ourselves and find others like us who get it. It’s even better when the lights aren’t too bright, the wind isn’t too harsh, the noises aren’t too loud, the subway isn’t too crowded, clothes don’t feel too tight or too loose or have scratchy tags, and so awesome when we know we can retreat to our safe space if the world around us gets to be too much. We’re usually great at finding what works for us and we do a great job of carving out alone time to regroup and really reflect on our lives. It will be nicer to be more accepted and understood in coming decades (I hope) and of course the increase in prevalence will mean we can feel less alone in our awesomeness. One of the advantages about being autistic is that we can be super focused on getting something really important done. We don’t get distracted by bullshit.
So what sucks about autism? The bullshit. You see the bullshit of the neurotypical world is what slows everything down. Not just for us, but clearly for everyone. For us it slows down our processing time trying to figure out who is sincere and who is full of shit. We have that thing called “mind-blindness” which means we have a really hard time reading other’s intentions (A.K.A. bullshit). For everyone in general, how satisfied are we with our government? See any bullshit happening there? What about everyday social interactions? Drama? Gossip? Autism just doesn’t compute that shit. We seriously just don’t get it. If there is a task, it needs to be completed. If a friend is in need, you help them and tell them you love them. These are concrete, easy rules to live by – a piece of cake for autistics! But in the neurotypical world, there are “rules” for things that cause people to act in ways we will simply never understand like “waiting periods” to call someone after a date. For me, I have had issues with being seen as arrogant because I didn’t know that I wasn’t supposed to share my knowledge about something when someone was asking about it. See? Isn’t that sentence itself confusing?
If we look back throughout the history of humans, we can draw from it the most simple of virtues by looking at the first tribal societies. Built around family, honor, respect, and responsibility, men and women attracted to each other coupled up, made babies, committed to their children, extended family and village. They worked hard. They had beautiful threads of community strung between every member of their villages through common goals, music, storytelling, and craft. They were happy having nearly nothing but each other.
Take that early, loving essence of man, combine it with the modern intellect and technology we have right this very moment and tell me that an autistic individual isn’t the product of those two most incredible evolutionary movements.
Our autistics today and to come will possess the most advanced technological tools for slingshotting us humans beyond the bullshit and into a future filled with advanced medicine, environmental responsibility, workplace proficiency, and more fun than the kid inside you can possibly imagine. (Think of flying cars and Star Wars Episode XX!) And they will do so for the good of all with big hearts, oodles of empathy, and tagless clothing.
Autism is the evolutionary cure for bullshit.
June 27, 2013 [Updated June 28, 2013 6:50am]
Ellington, CT – An exclusive country club in the suburbs of Connecticut excluded a family from becoming members because their autistic son would require a flotation vest while swimming in the pool. With recent headlines of autistic children drowning rather frequently, one would think that a flotation vest would be a fabulous idea. It seems it would be a much grander idea than outright discrimination of a person with disability and that person’s entire family.
However, when Mrs. Cristin Millen, a seventh grade Language Arts teacher in Ellington arrived at the Ellington Ridge Country Club to begin the membership process it never occurred to her that her son’s autism would exclude them from enjoying the same privileges other residents in the area enjoyed as members. She left without being given an application but was told someone would get back to her.
“I almost didn’t say anything about his autism at all because I assumed it wouldn’t possibly be an issue,” said Millen. “But when I became aware that the club had a rule banning flotation devices from the pool, I mentioned that I have a son with autism who is verbal, follows directions, and is a good swimmer. I explained that we would be in the pool with him the entire time and that the vest was really just for peace of mind as he has always worn one.”
Ellington Ridge took Mrs. Millen’s request for exception under consideration for less than 48 hours before responding with a denial of membership. Mrs. Millen was told that if an exception was made for one, an exception would have to be made for all, and that was not possible.
This country club is a private facility, which means that ordinarily the club owners and members could do whatever they please, invite whomever they choose to join, you get the idea. But under the Americans with Disabilities Act (ADA), any private club that opens its doors to the public at any time, waives that right. The Ellington Ridge Country Club offers to open its doors for banquets, weddings, business meetings, fundraisers, and birthday parties.
Wait a minute…
Can you imagine?
Can you imagine if someone like ME thought to plan my autistic daughter’s birthday party at a beautiful venue such as Ellington Ridge Country Club, put down a chunky deposit, invited ten or so other Flaptastic kiddos and their parental units? What would happen when all of us showed up at the pool with our vests and inflatable wings? Would we all be tossed to the curb?
Can you imagine?
Can you imagine, Ellington Ridge?
UPDATE: Friday, June 28, 2013 6:50am – Local media reached out to the ERCC yesterday afternoon for comment. Management quickly asserted that Mrs. Millen never filled out the application, so therefore the club was unable to review her family’s request. However, in WFSB’s on air coverage last evening, management admitted that Mrs. Millen was not given an application during the miscommunication throughout the week but that ERCC would happily accept the family’s application with waiver for the vest. In an email communication from management to Mrs. Millen last evening the same offer was made but included a timeline in which the Millen Family was advised it would take until mid-July before their application with waiver to accommodate their son’s need for a Coast Guard approved flotation vest could be approved by the Board of Directors of the Ellington Ridge Country Club.
LINK to WFSB News Coverage > CLICK HERE.
WHAT DO YOU THINK??? COMMENT BELOW…
Today should be a joyous day for us here. There should be balloons and presents and cake and donkey rides or something. But instead, it will be a quiet snoop and poop mission (real infantry term, you can look it up). SGM and I will slide into the school for graduation and slide out, likely with me retreating into the fetal position in the bed of the truck as he takes us down the highway toward home at 80 miles per hour so that the sensory thrills of the ride numb me into a coma.
Let me explain.
It has now been a little over two years since RM began attending her outplacement autism school. The one that took me fourteen months to get her into. They have an amazing typical peer preschool on site, NAEYC-accredited, with staff that is fluent in sign language, art, music, and love. The peers are ages three to five and are hand-picked to be excellent models for autistic friends. In this setting where RM has spent about one-third of her time over the last two years, she has learned critical basic pre-educational skills such as turn-taking, group games, learning to sit for circle time with weather and calendar, following simple group activities, learning about friends and social themes like birthdays, holidays, and family.
Her time there has been priceless.
And filled with joy.
So today is a bitter pill to swallow. My baby loves her friends in preschool. But she is now monstrously larger than they are, and as she is turning seven in a few weeks, one cannot argue that the time to move on has come. I accept that. The school has been fabulous about slowly weaning her time out of the preschool over the last few months, so that it shouldn’t be a recognizable trauma for anyone other than me.
So here we are. As she rode off on her van this morning the chest pains came and the crocodile tears and SGM telling me this is all ok, this is her path right now. And sure, I agree. And I didn’t even punch him. He’s right. And I continue to cling to the God’s honest belief that truly, RM’s very best friends are not the children at the school anyways. That was never the case from the very beginning. RM is in love with her teachers. The DOZENS of adults who love her and care for her and teach her and joke with her and smile with her and talk with her and listen to her every single time she has something to say.
She thrives at this place because it is the grownups that hear her and understand her. Not the typical peers, nor her classmates. She loves this place because she is challenged there, not by communication boundaries, but by academics. She loves this place because she knows well enough that these grownups are going to teach her the correct social cues every time. She doesn’t have to decipher the behaviors of the typical peers there anymore. And for now, just for now, I am ok with that. I have to be.
Here at home RM has her nine-year-old brother who adores her as her best friend. They belly-laugh and play legos and watch silly videos of themselves and belly-laugh some more. They are madly in love with each other. If school doesn’t have the “age-appropriate” peers, well I have the best one at home anyways.
Meanwhile, trust that I aim to correct this situation at the outplacement. There are far too many brilliant options to be considered. There are ways we haven’t yet found to give our kids access to social time with typical peer models, so let’s find them.
Even the “best” can always be “better”.
My hope and dream for all parents is that you truly, deep within your heart believe that those scary sounding letters “I.E.P.” can start to look less daunting. I want you to believe that you have the right, and the power, to build a program that has never been built before. You can build it for your child.
There is no such thing as, “We don’t do that.”
Autism Speaks obtained a letter from DoD to leaders in Congress dated May 7, 2013, expressing the several mystifying factors that make it impossible for autism therapies to be implemented. CMKAA, a federal law, was passed in 2012 and modified in Committee as a Pilot Program to be implemented no later than April 2, 2013. Families are still waiting.
It sounds like the DoD is truly worried for our military families with autism. If they start treating some of our kids, just think about what would happen:
First, there are too many kids to treat and not enough providers. Can you imagine? Even if one more child with autism received the treatment he or she needs while we figure this mess out? Well, that would be tragic. And I think promoting career advancement in the field of BCBAs is a stupid idea, too. I’m with you, DoD.
Next, apparently due to a lack of mobile diagnostic capability, the military kids who have autism are too spread out to find them all. So why start the search? We might actually find them. If we find them, we may have to treat them. Shhhhhh. Next thing we will find at our doorsteps are ghillie suits for our autistic kids with a note from the DoD that says, “Put this ghillie suit on your kid. Ghillie suits cure autism. And here’s a map to the nearest pond.”
If that doesn’t work, at some point the DoD will just have to start to acknowledge the existence of our thousands of autistic kids and that the treatments proven to work um, actually do. Which means, DoD, you will have to start treating them.
I know, DoD, if you start treating them, there will only be more and more to treat because autism is increasing in prevalence. So you’re right, DoD… let’s just pretend this all never happened. Coffee, anyone?
[The petition to Congress to actually MAKE autism treatments available to all military dependent children is still active and every signature sends a letter directly to every Armed Services Member urging them to take action. You will find the petition HERE. Sign it. SHARE it. Thank you.]
I was just tending to the farm and trying “not to get into any trouble.” SGM’s boots had just hit the ground in Afghanistan. RM was three years old and relatively healthy.
RM had transitioned into the special education preschool in district and was making very little progress. When the autism diagnosis came, the relationship with the district became a cyclone of lies and deceit and I was swept up into their storm.
I don’t remember how bad it really was. I only remember darkness and the feeling of spinning…
When I came to in an unfamiliar land, little did I know then that my house had landed purposefully atop the Wicked Witch that viciously ruled the Munchkins.
Another autism mom (RM’s YMCA teacher from more than a year prior) magically appeared descending through the clouds. She was surrounded in an effervescent glow with a gentle smile that could kill and in place of an exquisitely sparkled wand she carried a bloodied and bruised wooden bat.
She did not hand over a pair of ruby shoes. No. She handed me the bat.
It would take entirely too long to explain the misadventures down the Yellow Brick Road in this one post, many are highlighted in the archives here. But I will tell you that along the way to an appropriate outplacement I met many characters in The Land of Oz.
The Scarecrow led me in the wrong direction.
The Tin Man really had no heart.
The Cowardly Lion hid behind a title and a desk.
The Wicked Witch always waited until four o’clock on a Friday to mail shit to my home.
There were Flying Monkeys and a Forest of Fighting Trees. All terrifying at first glance but would reveal themselves as completely ineffective at their jobs. They relied on gruesome makeup and the special effects of words like “Due Process” and “Mediation” to keep up the charade.
I was desperate to make my way to Oz. I thought the power I needed to find comfort at home again could only be granted by The Great and Powerful Wizard.
I honestly had no idea who The Wizard was.
I went to Congress and looked for The Wizard there. I went to The White House, too. I went on cable news and begged an entire nation to help me find the answer. WHO is this Wizard?
WHO do I BEG for an education for my child? WHO will fight for her? WHO will LOVE her enough to say YES? WHO will seek justice for her?
WHO IS THE GODDAMNED WIZARD??
When my child’s placement is threatened, WHO do I fight?
When her programming needs to be reframed, WHO will write the goals for her to access the same curriculum as every other child? The science and the social studies, too?
WHO will teach me the laws and how to hold the district accountable?
PLEASE. TAKE ME TO THE FREAKING WIZARD.
I was searching for what was there all along. I just didn’t understand that I possessed the brains, heart, courage, and power to make it all happen.
Yes, I needed a little help from a Good Witch and countless other parents who shared their own experiences. Yes, I needed the bat once in a while to ward off The Flying Monkeys. Yes, I needed to educate myself.
But in the end, it took only a few emails and a bucket of water.
Because really, truly, I had The Power all along.
So do YOU.
So do YOU, my friend.
Don’t let the cast of characters in Oz make you feel less than THE MOST IMPORTANT, EFFECTIVE AND POWERFUL MEMBER OF YOUR CHILD’S EDUCATIONAL TEAM.
The Scarecrow is not smarter than you.
The Tin Man does not love your child.
The Cowardly Lion will never have your back.
At the end of the day your brains, love for your child, and courage to take charge of the Individualized Education Plan (IEP) are the most tangible and relevant elements in a land somewhere over the rainbow.
When I felt like the characters I faced were not acting in good faith, I opened up The Curtain using The Freedom of Information Act (FOIA). I used a State Complaint and the Individuals with Disabilities Education Act (IDEA) to pour a bucket of water on The Witch. You see, these are free and fairly straightforward tools that were created for ME. They are nothing to be afraid of and they are actually very easy to use. And if you feel that you aren’t sure of how to use them correctly, there are state and federal officials who get paid to enforce IDEA and FOIA. That is their job. They are not Flying Monkeys, THEY WORK FOR YOU.
Actually, everyone involved in your child’s education work for you, too. Even Scarecrow, Tin Man, and The Cowardly Lion. They are your employees. YOU are The Wizard.
I finally learned that the IEP is my own legally binding magic wand and as The Wizard I write the goals that dictate the services my child receives. If district and school staff are unable to execute programming that allows my child to access the general curriculum as outlined in her goals – separate goals for each core curriculum standard* – then I grab the bucket of water and pour.
There is no one to fight. There never was. I just needed to figure out that I AM THE WIZARD.
I. AM. THE. WIZARD.
And so are YOU, my friend. SO. ARE. YOU.
[*45 of 50 states have adopted Core Curriculum Standards and have/or are in the process of implementation. Individual states should have curriculum frameworks available on their education department websites, or for entertainment factor you can request the subject frameworks from your district BOE. The very basic intent of IDEA is that every child, regardless of disability has ACCESS to the SAME curriculum as the general education population in ALL subject areas INCLUDING ARTS AND SCIENCES. Kids with autism deserve better than goals that are reflective only of basic human functioning – they deserve to experience the entirety of what this world has to offer.]