When Does "Awareness" Stop Being Enough?

Autism is a complicated disability. Even within the same functioning labels, there are great variations. There is a rift within the community because many people feel their autism, or their child's autism, is THE autism. Anyone not affected by their specific brand isn't really autistic, and doesn't really get the challenges that come with the diagnosis. The real diagnosis, that they possess. 

This is how it feels to me, anyway. There might be talk about how functioning labels are inaccurate, or how "if you've met one person with autism, you've met one person with autism", but the truth is there are those who hold tight to those labels. Who believe the variations in the disorder are because most individuals diagnosed aren't really autistic. Not like their kid. The struggles other families face can't compare to their struggles. If there was an award for most affected by autism, they would win.

We can say we wish the divide within the community would close, but until there is acceptance that all individuals, and all families affected by autism are, well, affected by autism, things will never change.

We say we want autism awareness, but at what point do we move on from that? 

We say we want acceptance from society, but how can that be achieved when those within the community can't even accept that what autism looks like in their child doesn't have to be what it looks like in someone else? 

We say we want services and support, but only rally behind whichever services and support we feel benefit our own kids.

Insurance reform is great, unless you choose Floortime for your child. Or any therapy beyond ABA. 

Reaching out to the newly diagnosed is great, unless your kid is turning 18 with no place to live, and no educational or vocational support. 

Walking around a track for autism awareness is wonderful, until you realize all the money you've raised isn't really helping your family. Or any family. Not those on the ground who need real, tangible help. Not if you don't care about a cure, and just want to make sure your kid is alright after you're gone. 

Slapping a magnet on your car is all well and good, until you spend your life savings on fighting a school district over your child's education, because all the awareness in the world doesn't help people understand what your kid really needs to succeed.

And all the awareness in the world doesn't prevent our kids from being thrown in seclusion rooms, or restrained, or treated like 2nd (3rd? 4th?) class citizens in the classroom.

When do we stop kidding ourselves and realize the kind of awareness some people/organizations spread is based on fear, putting autistic individuals in jeopardy? The message society gets is that these kids, these adults, are burdens no one can bear. Broken human beings who must be cured, or eliminated from the gene pool. Who don't deserve a full, happy life. Not when their sole purpose on this earth is to destroy families, and hemorrhage money. 

When we will wake-up and realize we can't have it both ways? We are living in a fairy tale if we believe using this type of language doesn't negatively affect our kids. 

There cannot be peace where there is fear.

There cannot be love where there is hate.

There cannot be acceptance when all people want is a cure.

We have failed our kids when awareness becomes enough. 

When one type of therapy becomes enough. 

When one view of autism becomes enough. 

When we silence those who live with the disability, and listen only to parents, or researchers, or teachers, because we don't believe, really believe, those affected have anything to say. 

When we write off people based on test scores. Verbal ability. Physical appearance. 

At the end of the day there are those who think only they know autism, and only their message needs to be shared. Only their therapy needs to be covered by insurance. Only their desire for a cure needs to be talked about in mainstream media, or their view of what awareness is needs to be funded. When autism is the Big Bad, the worse we make it sound, the better. 

Except when you don't see it that way. But then, who is there to support that view? 

I sound like a broken record, but I cannot say this enough. We need to be honest, really, truly honest with ourselves about what we are putting out there. What we are telling the world. What our message means for our children now, and as they get older. 

We also need to decide if the good any one organization does outweighs the bad. We have to ask ourselves, are we driven by our comfort zone, or the changes we want to see moving forward, even if things get sticky?

It's for everyone one of us to decide, individually. I think sometimes we just get stuck in what we know, and fail to look beyond that.

Do you have to agree with me? No. Do I hope all of you take a few minutes to think about what you believe, who you support, and why? Yes. Just like anything else in life, I want everyone to think independently, and decide their truth. Not based on popular opinion. Not based on any one blog. Just based on what feels right in their heart. 

I know taking time out to really think about what I believe has brought about serious change. It's never easy, but always worth it. 

Just like our kids.

Be Kind To One Another

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Sometimes I think the autism community looks for ways to be divisive. That all of the controversial topics we argue over aren't enough, and more gasoline needs to be added to an already out of control fire. That we need to call out each and every person who thinks differently than we do, or who wants to change something we don't personally care about. That there is only one way, or one blogger, or one organization to listen to, and everyone else has nothing important to say.

Being nice is hard. It just is. It's not in our nature to lift people up, or think before we speak. At least, it doesn't seem to be. If we are honest with ourselves, I think we'll agree how it easy it is to say something negative, than it is to be supportive. Easier to criticize, than find something kind to say. Sometimes we feel such a great pull to share our opinions, we don't stop and think if we'll be hurting someone in the process.

That is, if we even care.

The truth is, there isn't an "all knowing" person within the autism community. There is no one organization we need to follow like sheep. There are lots of different people, with lots of different opinions and ideas, and most of them deserve the same amount of respect as the next (I say most because there are certain things I am not OK with, and will never get behind. Things that hurt our kids, physically, or emotionally.)

The other day I wrote about the importance of reaching out to those you see in your daily lives, who might be struggling. Who might just need a friend. Who are so caught up in loss and fear and desperation, they can't see a way out. Or who are just having a tough day, and need to know one other person understands. If we aren't careful with our words, with what we put out on social media or our blogs, there is no hope we'll ever be a true community of support. There's little hope we'll even be seen as decent human beings, and not just an angry mob looking to pick a fight.

I urge you to just think for yourself, fight for what you believe in, and don't let anyone knock you down. There is no one cause greater than the next. No one person with all the answers. Don't be broken by those who call your fight wrong, or petty, or stupid. Don't let anyone trivialize your life, or the lives of your children.

Be strong.

Be supportive.

Be a friend.

Be kind.


We'll fight, not out of spite
For someone must stand up for what's right
'Cause where there's a man who has no voice
There ours shall go singing
My hands are small I know
But they're not yours, they are my own
But they're not yours, they are my own
I am never broken

In the end only kindness matters
In the end only kindness matters
                                          -Jewel (Hands)

It Takes a Village, but Actually...

Yesterday was a rough morning for K. I don't know why, exactly. Tiredness, 9yo girl hormones, something else? Maybe all three? She just started out a little off when I woke her up for dance. I gave her the option of staying home, but she wanted to go. Part of me wanted to talk her into staying home, especially because dance is an hour away, but I left the decision to her. I figured she'd have some iPad time on the way there, and maybe things would turn around.

They didn't.

K went into her class, but didn't participate. I figured that was OK. She was sitting, fiddling with her bracelet, and I thought maybe she was working through something. I hoped she'd start feeling better, and it would be business as usual.

But then she started crying, so I decided it was time for a break. We found a quiet corner, and she burst out in tears. Seeing her like this breaks my heart. Especially because I have no clue how to help her, or even why she is sad. K goes through this a lot, and when she gets this upset she starts pulling to the surface every negative feeling she has.

I stood there hugging her, trying to hold back my own tears. I told her we could just go home, but, again, she wanted to stay. Maybe I should have made the decision to leave, but she's going to be 10 in a few months, and I really want her to feel that she has some control over her own life.

We stayed in our quiet corner for a few minutes, and K went back to class. Things were a little better, and she started to participate a bit, but I could tell she was still struggling.

So was I.

I sat in the small stairwell facing the studio, watching my girl, feeling so alone. All the other parents were talking with one another. Laughing. Socializing. Their children were fine. They weren't sitting on pins and needles, hoping to see just one smile from their kid.

I sat there wondering if I made the right decision, letting K go back class. I sat there wondering what was really going on, and how I could help. I sat there wondering why my child has to deal with such anxiety she can't allow herself to have fun. Because that's what fuels days like this...constant, debilitating, anxiety.

I sat on the stairs, resisting the urge to cry, while life went on around me. I was at a dance class for autistic children, yet I felt no different from when K had tried typical dance classes. Like there was no one else there who understood. No one I could talk to. No other parents holding their breath. It was just a given their kids would have fun, be happy, be OK.

One thing that got me through was watching another little girl try to get K to participate time and again. She would take K's hand, or go over and talk to K while trying to pull her gently towards the group. The good thing about a class for autistic children is that there is no judgement on the part of the kids. No one was looking at K like there was something wrong with her. It was really hard to hold back tears, watching another student try so hard to include my child.

My daughter does have a village. It's a village of her peers. Children like her who don't judge, and who truly want her around. For that, I am grateful. So very grateful.

But as much as we talk about parents needing support, can we truly say that village exists? We are adults, and it's no one's responsibility to come take our hand. We all have our own little group of friends, but do we ever consider those on the outside? Those who could use some extra support? Or are we incapable of reaching out? Really forming the support system every blog, status update, and tweet, tells us is essential?

Could we take a lesson from those children who see someone having a rough time, and instinctively reach out? I think we all know the answer to that question.

The thing is, sitting on some stairs alone isn't going to send me down the rabbit hole. But, I am sure there are parents who are thisclose to the edge, and who is there to help them?

A village isn't really a village if it acts more like a clique. If we truly want to help parents in crisis, we have to be aware when someone is struggling right beside us. When K was struggling yesterday, someone saw that, and surrounded her with love. Didn't give up. Just kept taking her hand. And you know what? She made K smile. She made her feel just a little bit better, which to me is nothing short of a miracle.

It's always a gift when our children show us the way.

I'm not writing this because I am angry at the other parents from dance. That's not my point at all. Sitting there alone was hard, but for me it's not a big deal. I also know I've probably missed opportunities to be there for others. I am writing this because it brought to the surface the fact that we as a community always talk about reaching out when we see someone in pain, but how often does it really happen?

One day there might be a parent sitting on those stairs, so close to that rabbit hole, who really needs support. Who needs an invitation for a night out. Who needs someone to just sit and listen. The question is, are you ready to offer that support, even to someone you don't know? When you talk about a village, are your words empty? Meant just for those you already call friends?

Thankfully, K's class ended on a high note when she received a light up wand to take home (sometimes it's the little things), and seeing my child happy was all it took to make me feel better. I learned a lot, though, watching the interaction between my daughter and her classmate. I realized I don't want to just talk the talk. That I need to keep my eyes open for those who are struggling, and that words on a page are just words until you put them into action.

Light up wands make everything better.