Tag Archives: autism diagnosis

Dear Autism “Community”: Do You HEAR Yourselves?

seinfeldThese 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.***


Throw Mama from the Train

Last weekend I had the most wonderful opportunity for a Mamas’ Night Out in the real big city – New York. 

My date was with another Warrior Mama.  We had never actually met before, but we were sisters and knew each other as much.  She is a military wife, too, and mother to three gorgeous babes – one with autism.  We have a world of things in common.  Little else in life can compare to that kind of kinship.  Deployments and autism are not lifestyles that can be compared to anything else.  Unless you live it – you just don’t know.  So I was thrilled at the chance to spend some time away from the day-to-day with a fellow Warrior Mama who gets it and gets how nice it is to be neither a military wife nor an autism mama for an afternoon – and who also knows how to have a good time and a lot of wine. 

But this post isn’t about my FABULOUS date with a fellow Warrior Mama – though I will get to that at a later time.

This is about the train ride TO the big city.  It’s about our human connection and how our individual journeys through life on this rock are not so individual after all.

Strap yourselves in for this one.

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I was shockingly on time for my appointment with ME for once.  I had gotten up early and enjoyed an unhurried cup of coffee.  I actually enjoyed picking out my outfit and getting dressed with a casual attitude of damn – I’m still cute after all.  I was feeling good.

I kissed my SGM and kiddos goodbye and got in my truck, found my favorite song on the iPod and let ‘er rip.  It was an hour drive to the train, then it would be another two hours on the train.

It was pretty close, but I made it to the station in time to board my train to freedom.  I sat in a group of five face-to-face seats with a mom, her teen daughter, daughter’s bestie and next to me was a young woman from London here on a 3-month internship with an ivy-league university hospital.  Interesting, I thought.  Our train pulled out of the station right on time.  About 500 yards down the track we were stopped and told our engine was not working properly, we would be brought back to the platform to board the next train to Grand Central.  Not the end of the world, I thought, it only put me about 30 minutes behind schedule but I would still make it in time to meet my Mama friend for lunch.

Well.  It’s not like you get up and hold hands with your seatmates on the way to the new train so that you all can continue the conversation.  That would be awkward.  Instead, I boarded the new train and peered around for a seat next to someone that looked relatively showered and ‘normal’.  The seatmate I chose was most definitely showered, and would prove to be nothing short of supernatural.

I’m a fanatical believer in what’s meant to be.  There are such things as simple coincidences, but this train ride would jolt me to the core. 

The woman looked to be about my age.  She had an LL Bean tote packed to the brim and was sipping a coffee.  She had a calm, peaceful look on her face.  She looked oddly familiar, but I have come to realize that those I have never met before who look familiar often do because my soul was expecting them. 

We made the usual small talk.  I felt instantly at ease with her, as if we were old friends.  We exchanged itineraries of our trips to the big city.  Turns out, we were both on a Mama’s Night Out.  Hers would be an overnight trip, and mine just a day trip.  We both sighed as we delighted in the break from our busy lives as mommies.

The conversation turned to how lovely it was to take this break.  I shared that this was my first big solo adventure in a couple of years – that my husband had recently returned home from a deployment and my daughter diagnosed with autism.

Wait for it

“My cousin works for Autism Speaks,” she says.

“Really? – What’s her name?  Maybe I have met her.”

Yes, my friends – I knew this woman’s cousin from various Autism Speaks events.

There’s more.

“So, how did you know your daughter had autism?”  I turned sharply to see her face as the words jumped from her lips and landed on my heart with a sickening thud.  Our delightful conversation had just imploded.  We both would be changed forever with the approaching exchange.

“Well, we likely knew nearly a year before the diagnosis.  I have a nephew with autism.  But I don’t think we were ready to add another diagnosis to the list quite yet.”  I went on to explain RM’s 4q Deletion Syndrome – the feeding tube, open-heart surgery, the nearly constant sleepless nights wondering if she would still be with us in the morning. 

I spoke in general terms, not wanting to overwhelm with med-speak.  She countered with a tale that would leave me feeling like my roller coaster of the previous five years was a day at the spa. 

She was the mother of five.  10-year-old twins, an 8-year-old, 6-year-old and a nearly-three-year-old.  After the twins survived birth at 28 weeks, she would later bring both of her daughters through battles with cancer.  Cancer

I listened intently as she described that this was her year – a year with healthy children and some time to regroup and just be a wife and mom, not a 24/hour nurse.  Wow – I could relate to this.

I told her I felt the same after the first three years caring for RM.  That though there were obvious signs that she had autism – signs I was well-versed in – I just couldn’t take another hit like that yet.  Getting back to her initial question of how I knew, I described the hand-flapping and the toe-walking, and her lack of speech.

A flood of tears poured from this mother’s eyes.  She started to shake.  “My son is turning three and he toe-walks.  He doesn’t have any real speech yet.”

It was a punch to the gut I knew so intimately.  I grabbed this woman and hugged her so tightly as I told her, “your son is still your son, and it will be ok.”

She took a moment to compose herself and wipe away her tears.  I waited patiently. 

After a few silent minutes went by, we chatted some more.  Now we were family.  It’s difficult to explain if you haven’t been there – but there is a connection that is made when one parent to a child with autism finds themselves bumping into another.  This bond – it instantly gives you a safe place to fall, a burst of strength when you need it and comfort in knowing you do not travel this journey alone.

This amazing mother and I talked about the importance of taking time to renew, regroup and respond.  I tried my damndest to provide her with the endorsement of getting that evaluation for her son when she was ready.  That it would be hard, but that she wasn’t alone and it was ok for her to breathe first.

It was a moment that was meant to be.

Our ride was near its end.  The separation was awkward.  I told her she could find me anytime through her cousin if she ever wanted to get together.

She left the platform in one direction, and I in another.

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We are all connected – for better and for worse.  Whatever higher power or force of nature you believe in – know that it is not for naught.

Our journeys are interwoven among a superhighway of life experiences that we share with one another.  We are here for the purpose of being – not having.

I have many things to be grateful for.

I am blessed with open eyes and the opportunity to share in this life with others who ride the same train.  None of us travel alone.  Ever.


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