Celebrating Autism?

Autism can't define me. I define autism. - Kerry Magro

I read an article yesterday written by a mother of 3 autistic girls, who expressed her anger at Autism Awareness Day, April 2nd, and the entire Autism Awareness Month of April.

The overall tone of the article got to me, and I wanted to just stop reading and dismiss it - but pushed myself to read through and judge it on its overall message.

Still, quotes like this got to me:

Autism Speaks talks about World Autism Awareness Day as an event that “celebrates the unique talents and skills of persons with autism.” I’m all for honoring the achievements of people with autism, but the term “unique talents and skills” hardly connotes a global crisis. That’s the tone increasingly used in conversations about this disorder.

I tried to pull apart what she was saying, and I wholeheartedly agree with at least half of what she's saying. Autism isn't a picnic. It's not easy. There are resources needed, people need to be educated, there are limitations.

She talks about having 3 daughters who require a lot of care, even as young adults. The fear that she has about who will take care of them when she's gone, the stress I'm sure she feels, the isolation that we, as parents of special needs, kids often feel - all of that comes out very clearly in what she's written. I cannot compare my experience to hers, and I can't pretend that I know what it's like to live her life. That's not the point of this, I'm not judging.

I deal with all the trials of autism on a day to day basis too. My son is high functioning, which means he can dress himself, he can get himself breakfast, he can get ready for school on his own. I'm grateful for that. On the flip side, he just looks so dang normal that it's easy for people to forget that he's not typical. That he still does need help. That he's often in his own little world. That he can't express himself well, that he isn't being rude when he stares at the ground and grunts in response to those speaking to him. It's easy to get frustrated with him when you have to tell him 20 times in 5 minutes to do the same task. Or when there's too much going on around him and he starts flailing or swinging things, or when he's just done, had enough, and starts screaming.

My son is 11 years old. I have been learning for 11 years, though we only received a diagnosis a year and a half ago. He has a significant language learning disability, and even though he has so much vocabulary and can speak and articulate clearly, he does not learn through language. He has huge difficulty in writing and reading assignments. He has ADHD and can't be medicated because the side effects are worse than the ADHD itself. He has high anxiety. He struggles to make friends. This morning I leaned down to kiss the top of his head while he ate breakfast and he squirmed away from me so much that he was twisted halfway down to the floor - before I even touched him. He's my baby, and yet he never let me baby him, never wanted to cuddle or hug or sit with me. He hates me looking at him and I get the most conversation from him while driving since I'm not looking at him then, he feels more comfortable. My dreams for him have changed. I look at day to day victories or problems now, and take things as they come. I worry about what high school will be like for him. I worry about what transitioning to adulthood will mean for him. I hope that he will be able to get a job and manage his own life, rather than taking those things for granted.

So, I get it. It's not easy. It's not something we wish for our children, it's not something to be celebrated in and of itself. Autism isn't great. But then she writes:

Celebrating talents does little to educate the public on the intense challenges of the diagnosis and the tough aspects of living with the disability. What the autism community needs isn’t a party, but a sense of urgency and true crisis.

The thing is, that's not what I feel that Austim Awareness is about. It's not about celebrating the disorder, it's about celebrating the people. The fact that they try hard, have unique thinking and learning styles, the fact that they overcome. The fact that even though autism stinks, there are silver linings. My son can build anything, anything if he has a diagram to show him how. He is brilliant in that way, much more than I am. He's inventive and creative. He loves working with his hands. He's proud of everything he makes, and damn it, the stuff he makes is great. There are areas where he absolutely excels, they're just not the areas that are traditionally measured.

People with autism are not autism. They are still people with their own skills, individuality and worth. When we received my son's diagnosis, I expected to feel validated, I expected to feel relieved that we knew what we were dealing with and could move forward; instead I felt a profound sense of loss and grief that I wasn't prepared for. My husband took it in stride, and said to me, "This doesn't change who he is, only what we know about him." It was exactly what I needed to hear at that time. Our son didn't morph into a disabled person because of a diagnosis. He was, and is, exactly who he's always been - we just know better how to help him now.

I don't feel that Autism Awareness is about celebrating a disorder. I feel that it's about inclusion. Showing people that those with autism are just people, like the rest of us. They have the same wants and needs, they want to be included, they aren't scary or wrong.

Absolutely this also needs to be a time for education. Everyone needs to understand that this is not something to aspire to, it's not what you want to struggle with, it's not what any of us wished for for our kids. But we take it in stride because we have to, because they're still great kids, because we love them... just like our typical kids. We want to help them succeed, to feel good about who they are, to be the best version of themselves - whatever that may look like for their lives. We want others to understand them. We do not want them defined by their disorder. We do not want them labelled as "weird" or "difficult."

There is a balance. Living with autism isn't a party, but it's not all doom and gloom either. There are ups and downs, just like, well - life. Anyone's life. Their difficulties may be larger, but their victories are cause for celebration. When my older, typical child got all A's on his report cards, we said "Good job!" When my autistic child got B's and C's along with a gold star sticker and a "Great effort!" written in from his teacher, I nearly cried. First semester of grade 5, and it was the first "good" report card I'd ever seen, and you better believe I celebrated that.

The world doesn't look at the Special Olympics and say that we're celebrating spinal cord injuries, for instance, instead we understand that we are celebrating people who do great things, despite their adversity. We understand that the disability is life changing and difficult, but these people have overcome it to the highest degree that they can. We understand that education is needed to make the world more inclusive for those with physical disabilities. We understand that resources are needed, research is needed and that education is vital. There's balance.

We need to do the same for Autism Awareness. Research. Resources. Education. Supports. Donating to those organizations on the front lines of the disorder. But also, hell yes, celebrating the people who overcome, who bring unique perspectives and who, just like all of us, just want to be loved and accepted for who they are.