Wednesday, February 27, 2013

Are We Allowed?

I struggle with our family belonging, within the Autism community. I look at K, and wonder how she can possibly have the same diagnosis as those profoundly affected? How can I look to those who struggle so desparately, and say we are on the same team?

I recently took K to an Autism friendly production of Annie. It was my favorite musical (and movie) as a child. I was so excited to share it with my girl, in a place where she could be herself, without judgement. If she bounced in her seat, needed a beak, couldn't keep quiet, it would be OK. A place where I didn't have to feel guilty, or like all eyes were on us.

Except, I did feel guilty. A large majority of the people there were those who live with severe Autism. I looked at my girl and felt like a fraud. I felt ridiculous for even purchasing tickets, and maybe taking seats from those who needed them more.

To be honest, there are times I struggle with even telling people K is on the spectrum. We have testing that proves it, from school and outside clinics. She faces very real obstacles on a daily basis, and there definite struggles in our lives. She isn't even able to be mainstreamed at this point. But, still, she speaks, she interacts. She is high-functioning by the standards set by most, and there are those who have spoken out against our place within the community.  Who have told me as much. That is when the guilt sets in.

This guilt. This feeling that we don't belong, it makes me wary of sharing too much. There are a select few with whom I am completely honest, but for the most part my days are filled trying to find silver linings.  Because, we are lucky. At least, that's what I'm told. That our struggles, no matter how I percieve them, will never compare to those of others. That my fears, worries, anxieties, they all pale in comparison. Because, there is always a comparison.

I didn't choose where my daughter fell on the spectrum. There was nothing magical that took her from being a non-verbal toddler, to the higher-functiong child she is today. It's just how things worked out. Does it make us any less part of this community?

That is the million dollar question.

Are we not allowed to share the difficult times because there will always be someone else who has it worse?

I want to say that yes, of course we are allowed. But, I don't know if I believe that myself.

And that can make life a very lonely place. Especially for my girl, because there are those who refuse her entrance on either side. Not typical enough, yet not Autistic enough.

I would love for there to be acceptance within the Autism community. For it not to be a series of one-ups, or who has it better (or worse). To be able to take K to an Autism friendly play, without feeling like we don't belong. That we are offensive in our presence, because there are those who struggle more.

And that maybe it's OK to not always look for that silver lining, because sometimes things just suck, and it's OK to feel that, even though, yes, there are those who will alwas have it worse.

We should all be allowed to live honestly, without judgement. Getting to that place is the challenge, at least for me. All I want is for my child to belong somewhere. She deserves that.


  1. Good morning. I'm a Colorado mother of 3 (my oldest is nearly 6 and also has an autism diagnosis). I have posted before on your previous blog and found you again through Hopeful Parents. I don't have a blog, so I rarely comment, but I do really appreciate your posts. While the progress indicated by comments from people that did not know my son 2 or 3 years ago like "Are you sure you got the right diagnosis?" "He doesn't SEEM autistic to me" are a great reminder of how far he's come, I too struggle with where to fit in. Those that know where we've been are so supportive and impressed by him and accepting of his "quirks" and intense anxiety. Those that don't know about (or accept the autism diagnosis) just seem to judge my parenting. It is so hard for any parent to see their child as an outsider. So much harder when our families have spent so much time and effort on social/behavior programs/therapies and on seeking out other people/families impacted by autism that we expect to be more accepting. The autism diagnosis covers such a HUGE diversity of abilities and struggles on its spectrum that I often wonder if there will ever truly be an autism "community".

    Dawn (CO mother of 3)

    1. That is exactly it. Those who have been there the WHOLE time, get it. They saw when K was 3 and not talking. Not playing like the other kids. Massive meltdowns everywhere. They can appreciate how hard she's worked (we've all worked!) and how far she's come. Those who meet her now, they are dubious. It stinks, bc it has been years of hard work, but also just dumb luck. Who knows what makes one kid become high functioning, and another not. I have friends who were promised by doctors their kid would be fine, yet they never made the progress hoped. When they say spectrum, they mean spectrum!

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  4. ONe legitimate anonymous, two spammers. Not a bad haul ;).

    On a serious note, Caroline and Sam are both on that "is this really autism" end of the spectrum, but don't doubt for a minute that they aren't really there. The same is true of K.

    1. I never had spam issues on my previous blog...this is annoying!

  5. Found this post through Jim Walter.
    My son is also high functioning - especially since he's had a year of more intensive therapy after diagnosis of PDD-NOS. In fact, today, I had a chat with his teacher, just to go over his progress in the past couple months since he started in his class. At one point, she dropped the statement, "He definitely isn't Autistic." No, he is. But I let it go. There is an Autism class next door to hers & my son used to be in that class, but he didn't quite fit in and it made him anxious. But that doesn't mean he's not Autistic. He was supposed to be evaluated again with his neuro group this year prior to starting preschool, but his specialist decided not to do the test again, because he is doing so well that he might fall off the spectrum, so far as the test goes - even though she knows and I know that he is really Autistic. People don't see the stuff we see at home, when he's with Mommy & Daddy.

    1. People who haven't know us since K was little don't fully understand. They didn't see the non verbal 3yo, who didn't play. Didn't know what to do with other kids. Had the massive meltdowns. They weren't there for the darkest years (kinder and 1st grade). I mean, my child has made giant leaps the past couple years, but does that mean suddenly she isn't autistic? Um, no. HA...I mean, she can't mainstream, and we are needing to find a private day school, so clearly there are still issues, but, yeah, if a kid can "pass" for a minute, then they must not be autistic. ALL bad parenting, indeed!