Saturday, 12 April 2014

Why Autism Parents Don't Share- Autism Awareness Is Not Reality

I know that you are waiting to hear about our NIH appointment, but I am still processing some of it and frankly not quite ready to talk about it yet.  Everything is fine; it was just A LOT, that’s all.
Also, I need to vent.  This is still “Autism Awareness Month” right?  Or more appropriately in cases, Autism Acceptance month, or Autism Action Month.  I actually prefer both of those.  So here’s the thing.  Many of us autism families just don’t tell you much.  Yes, I have a stinking blog about my family’s life with autism, I know.  But even here, most of the time my writing is reserved for funny stories, or really major life/medical events.  The day to day, which by the way, is just grueling, is not entertaining, it is not glamorous, there are no “heroes” and there is not much to say except  that I’m freaking exhausted and half the time feel like my kids are snickering behind their doors, saying “almost! We almost tipped her over the edge tonight- how much further do we have to go??”  And as a mom I feel chronically inadequate, and judged.  Mostly, judged.  My kids don’t act like other kids, they just don’t.  And while it’s not anything that I did, and I know that, I am fragile.  I am very sensitive to comments from others, and quite often more willing to accept the negative about myself, it’s always just been easier for me to believe those things than it is for me to believe” you are an amazing mother” or “you are doing a great job”.
This brings me to the point of why, even though I share here, I keep my boys’ diagnoses from many people in my life.  Honestly, I don’t want to hear it.  And even when I think I have heard everything, there is always some special person who exceeds my expectations when it comes to ignorance and flat out rudeness.  I have been at my current job for almost 8 years, so since before I was even pregnant with Jack.  All of my direct coworkers, aka, all of the transplant coordinators on my team know about the boys’ diagnoses.  I mean, I take FMLA for appointments, and have therapies and IEP meetings in the middle of the workday, so that’s kind of necessary.  Plus, we work fairly closely for people who have rarely met face to face.  Anyway, I shared this information with much trepidation, and frankly it is still hard to share if there is a new team member, but with those guys, I do it.  And everyone has been extremely supportive, for which I am extremely grateful.
However, I have two other large groups of people I work with on a daily basis- case managers that work for the same company as I do who I speak with about my patients and then transplant coordinators from all of the different hospitals that I work with.  I know many of these professionals “well” in a work way, so you know, hardly at all, but we can talk and joke for quite a while when we call each other.  Almost none of these people know that my kids have autism.  To put this in perspective, these people did know when I was out on maternity leave 7 years ago- I have worked with them for that long.  Still I do not share.  I am unwilling to risk one of the very predictable reactions.  Which are:
a.        “How do you do it???  You poor thing!  Your kids are so lucky- keep fighting, sis boom bah!!”
This is a positive reaction- of all the possibilities; this is what I hope for.  I still don’t want it because it is emotionally exhausting to go through this “dance” over and over again, but I will take it over the other options.
b.       “Oh, my nephew twice removed who I met once in 1986 has autism- can’t remember his name right now, but he had some speech and now he’s fine- your sons will be fine.”
c.       I am sure they ARE fine- autism is so over diagnosed these days- heck I would probably have autism if I was a kid now.  (well, if these are your best social skills….no I will NOT be mean)
d.      That’s just the “designer” diagnosis of the decade.  Back when my kids were little it was…….blank…..someone told me my kid had it, but I took care of it by blank and they are fine now.  This is by far the worst one.

Why is “d” the worst?  Well let’s see, first it invalidates what my family is going through, which is always special- it implies that my kids don’t really have any issues, but the professionals who love to label everyone with something have “chosen” to put my kids in this box.  And I, as a sucky parent, have accepted this box.  If only I were strong like this person, I would have persevered, ripped the label off of my child, and strong armed my way through a system that clearly doesn’t recognize how perfect my child actually is.  Well duh.

This happened to me on Thursday- one of the transplant coordinators at a facility which will remain nameless, who covers an organ which I will also leave to the imagination, was talking to me about her husband who has been ill. I was expressing my concern, when she started talking about how uncomfortable the cots are for caregivers in the hospital.  I can relate to this from staying with Nate in the past, and with our upcoming trip to NIH, and stay on just such a cot, I felt her pain.  I shared this with her, and explained that the boys have autism.  This is one of the coordinators I have worked with since 2006.  First time sharing.  Seriously. 

And so it began- my reminder of why I never tell anyone.  I will first remind you that this woman is a nurse.  Ha.  So, she starts going on and on about how the “thing” was  ADHD when her son was little, and she could tell people “thought” he had something wrong with him, so she took it upon herself to “fix” it.  How, pray tell, did she “fix” her kid’s ADHD all by herself?  By strapping him in his high chair and leaving him there, to “teach” him to sit still.  When he needed a break from that, she isolated him in his playpen so the space was limited.  Apparently this worked like a charm.  When he was older and got one “negative report” at school, she walked through the hallways at the school and stood in the doorway daily giving him, and I quote, “the stink eye”.  And that took care of that.  How do I explain that likely my son’s aide, special educator, speech therapist, teacher and OT might think it a bit odd if they turned around and saw me sneering at Jack in the doorway?  Especially if the office didn’t notify them when I came through security that I was coming in for a “stink eye” therapy session.  Seriously?  And ya think you know someone.

Thank gawd for instant messaging at work, so I could vent to my coworkers, one of whom said “wow, great thinking mommy dearest”.  The other said “crap, I totally forgot to tell you about high chair therapy, sorry about that!”  Seriously, she could have saved me a lot of time and money. 
So this is someone I have worked with for 8 YEARS, who is a nurse.  And this is the reaction I get.  Autism awareness- not happening.  So while I would prefer autism acceptance and action, clearly we have not gotten past step 1 in the process.  How depressing is it, as a parent, especially one who works in the health/caring professions, to realize that?  Please stop judging a situation you know nothing about people.  If I had wanted to, I could have explained to this individual that both of the boys have been diagnosed at some of the most reputable institutions in the world (Hopkins, Children’s National Medical Center, NIH just to name a few), that this is a medically diagnosed condition, and one that both kids have been having professional therapies for for years.  I could have explained how involved their IEP’s are, or the fact that even with all of these interventions, we have needed to have the kids in 4 different elementary schools thus far, and our oldest isn’t even 7 years old yet.  I could have talked about how difficult it is to take the boys anywhere without encountering a meltdown of some kind.  Instead I said, “I really hope your husband feels better soon.  Have a good weekend.” 
Next time I call, I will say, “wow nice weather we have been having”.  Or “did John Doe who tested positive for heroin ever show up for his consult??”  I will not say, “how is your son’s treatment for his likely severe, intractable, and yet unexplained claustrophobia going?”  “Has he blamed you yet?”  “Has his son fallen out of his highchair yet because he for some reason that he cannot explain refuses to strap him in?”  Nope, I will pretend this little conversation never happened.  I will go back to being “Jennifer with the authorization for….”  It’s much less disturbing. 


  1. Would you mind if I pose a question?
    What percentage/ratio would you give to the answers to the question, What does life of an autistic person consist of?
    A. Struggle with his/her autism, whether willingly or compelled.
    B. Finding ways to live with autism (which I mean to oppose to struggle).

  2. Wow - very powerful article. I am also a mother of a child on the spectrum (mine is a girl). I must say that I have developed a look that I give people who respond to me with stupid answers when they find out my daughter has autism. It kind of combines that look mom gave me when I was a kid and said something I shouldn't with the look a teacher gives a child who isn't behaving appropriately. I have found that it works wonders when accompanied by a moment of complete silence, followed by changing the subject. I have found that most of these people avoid the subject entirely after that (which is fine with me)

    Can I share my website with you? is a site I created to help parents with kids on the spectrum find the services and support they need in their local area. I would love for you (as an experienced blogger) to take a look and let me know what you think.

  3. I just found your blog and was reading through this one and had to comment because you left out one detail that I am sure you have dealt with because we all have. When one of these pearls of wisdom comes from a family member.....oh yeah, I went down that road.....Last year we stayed home from Thanksgiving festivities and I am strongly considering it yet again this year. We did a small meal at home and did themed activities the boys could enjoy rather than deal with the torture for everyone involved.