Tag Archives: acceptance

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.***

Through the Looking Glass

 “…Because at its core, it’s a message about tolerance.  About compassion.  About allowing ourselves to look past what we think we see and to find out what really is.  It’s a message about difference.  And about moving past fear into understanding.  It’s a message about the world that we are creating for our children.” ~ Jess, Diary of a Mom, “we shall be free


At a time when Michele Bachmann is getting ridiculous air time touting her ‘family values’ and the ‘bondage’ of the gay lifestyle, I feel called to stand up as a human and say – No.  NO FREAKING WAY. 

Politically, it very specifically states in our own Declaration of Independence the following guidelines for protection of our citizens’ right to be HAPPY:

“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness. That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed, That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness. Prudence, indeed, will dictate that Governments long established should not be changed for light and transient causes; and accordingly all experience hath shewn, that mankind are more disposed to suffer, while evils are sufferable, than to right themselves by abolishing the forms to which they are accustomed. But when a long train of abuses and usurpations, pursuing invariably the same Object evinces a design to reduce them under absolute Despotism, it is their right, it is their duty, to throw off such Government, and to provide new Guards for their future security.”

These first declaratives of freedom for men have evolved so very far already – to include women, to include people of color and persons with disabilities.  Unfolding slowly over the last hundred years, it has at times gotten ugly along the way and we are far from the finish line.  But we are getting there.  And we must push on to include EVERYONE in these unalienable rights.  Not just with legislation but with action, with compassion, with love and tolerance.

The few, like Bachmann, who insert themselves in front of the camera and consistently spew hate and intolerance under the guise of political posturing for the ‘future of our family values’ shall someday find themselves alone and their voices stifled.  Because the REAL Americans who have yet to gather up collectively to speak WILL do so.  They WILL rise up.  And the message will be clear:  We ARE a country of love and tolerance.  We ARE – at our very core – Patriots.  Patriots in the purest sense.  Patriots dedicated to the founding values of this country.  Values that have continued to evolve and INDEED DO INCLUDE EVERY PERSON.  Regardless of race, gender, sexuality or ability.

Religiously, there are those who speak of ‘God’s Law’, the Holy Bible and the ‘abomination’ that is homosexuality.  I just do not see how anyone who claims to be a follower of Christ could deny fellow brothers and sisters the right to pursue love and happiness and a full life.

So I feel the need to include another perspective – that of a mother to a beautiful little girl with a genetic abnormality.  Someone who was ‘born that way’.

We are all creatures of God.  Created by Him, of His own design.

My daughter was born with a missing portion of her 4th chromosome.  She has physical and developmental disabilities directly related to her very design.  HIS design.

Though my daughter was born with normal, working female genitalia, I do know many children with chromosome deletions that were designed by God with some anatomical differences.  Whether those differences have included both male and female parts, they remain differences nonetheless.  In some cases, the biological gender of a child is truly up for interpretation.

The graphic nature of this conversation may be uncomfortable for some.  But I can assure you these unique children – children of God like you and me – are uncomfortable, too.  Whether their sexuality is affected by physical differences or sexual preference, they deserve love in this world.  They deserve to find a place in this world where they can learn of themselves and find value in the gift they are.  They deserve as everyone does to move beyond judgement and discomfort and learn to walk tall knowing that regardless, GOD, their One Designer, made them as they are ON PURPOSE.  God makes no accidents.  We do.  With our words, our fear and OUR expectations of how WE interpret His design.  So whether my daughter has a working vagina or if she had been born with ovaries and a penis – HE MADE HER THAT WAY.  If her body in its uniqueness defines the desires of her heart, who are we to judge what His plan for her is?  And why would we think His plan included suffrage based on who she loves?
Let me tell you.  When RM was born and we received her genetic karyotype [46,XX,del(4)(q32.2-ter)] we knew immediately that though her DNA said she was a girl, there could be any number of anatomical differences within her affecting her future sexual identity.  That made absolutely no difference in how fiercely we loved her from the start.  It made no difference in our desire to just want her to grow to be HAPPY.  A hysteroscopy at age 3 confirmed that she had all of the normal organs of a little girl.  It was welcomed news, but it was really irrelevant in the bigger picture.  She is our baby.  And we love her just the way she is.

Jesus was sent to us to teach us to love one another.  Above all else, that was the singular gift of Him.  Yes, there were some guiding commandments and basic law that were also handed down.  But like our Declaration of Independence, doesn’t God also have the right to amend those ideals?  He gave us the gift of Free Will – can He not adjust His own judgments as humans move forward?  Thousands of years ago, a baby like mine rarely would have survived in the womb or surely would have died soon after birth.  We have evolved.  We now are witness to medical miracles every day.  Do you really believe that God’s Law has not evolved as well?

A lot has changed since the time of Christ.  A. LOT. HAS. CHANGED.  Unless God Himself comes back around and tells us He hasn’t changed His mind – I simply have to believe that He adjusts and grows as we all do.  HE is watching us and living within us.  He is experiencing the progress firsthand.  As His only Son was sent to do the same, I can only imagine how pleased He must be with those who continue to preach love, tolerance AND acceptance.

And I can only imagine His angst over those who have stepped through the Looking Glass and found Michele Bachmann.
PS, Michele – Would you have the heterosexual balls to stand in front of a soldier who has sacrificed a limb on your behalf in the name of Freedom and tell that soldier he is worthy of a medal but not of love?  Oh yeah that’s right – you’d deny him the right to serve in the first place.
[Editor’s note:  I know YOU support our troops!  So please go to CMKAA and show your support for the Caring for Military Kids with Autism Act.  1 in 88 military children are counting on you!]

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