It’s Autism

It took the neurologist all of five minutes to diagnose my daughter with what I had spent three years wondering about. She is the one in every 58 kids (or whatever the statistic is today) with autism. I was ready for it, but yet not. I kind of knew it, but sort of didn’t. This diagnosis changes nothing and everything.

Society is not made for people with autism or any differences for that matter. It took me four days after the diagnosis before I even cried about it, and it’s taken me a couple weeks to sit down and write about it. The bottom line is, things will be harder for my daughter, and as her parent who wants the best for her, that is a hard pill to swallow.

As I have struggled through processing my feelings about her official diagnosis, I have been reminded over and over that society isn’t ready to accept people who are different.

I heard a mom complaining that there were too many kids with autism in her daughter’s summer camp.

I read an email that had been written to the mom of a child with autism in which the author wrote that it wasn’t her problem that she (the mom of the child with autism) had reproduced a defective child.

And when I told a very close relative about my daughter’s diagnosis, she responded by saying she didn’t agree with labels. Autism does not make someone “less than” or defective, nor is it a label. But how can I convince someone who otherwise seems to have already made her mind up?

I have also read things written by others in which they wax poetic about autism – how it’s a “superpower”. People use words like “beautiful” to describe it. It’s not those things either.

Autism is defined as a neurodevelopmental disorder characterized by an impaired ability to form social connections and to communicate with others. It’s a spectrum disorder.

The mom with a daughter in an inclusive camp, the author of the email, and my relative are all stories that drive the point home that things will be harder for my daughter, as someone with autism. Other people’s antiquated knowledge and lack of compassion contribute to the stigma that surrounds the diagnosis. These things are what keep me up at night, not autism.

At one point in our assessment with the neurologist he looked at me and said, “You knew. You knew she had autism, right?” I said, “Well sort of.” The truth is I didn’t know. I wondered, sure, but always hoped it was something that we could get past. Her developmental delays were less significant, and she crushed her IEP goals last year. Cognitively, she is functioning on par with her peers and with some things like colors and numbers, she has scored in higher ranges for her age.

But there is no denying she goes into her own world, and she does it often. She disappears into conversations with herself often with a stick in one hand, during which time her speech becomes rhythmic, almost musical. She goes there and stays there while we walk through the zoo or along a nature trail. She is happy there, and those are the times when I want to reach into her world and connect with her, but I can’t. I feel lost in those moments. I hoped that one day I wouldn’t always feel that disconnect from her world, but I likely always will.

Autism is not an excuse – the neurologist reiterated this point several times during our discussion. He explained that she has the ability to learn anything and autism cannot be an excuse for her to behave poorly or not do things when she is cognitively perfectly able to do them. She is capable and has full potential, he said. He said socially she is like an anthropologist on Mars and every day is new to her with regard to her social interactions. But, she is capable of learning how to navigate these situations. It will take time. It will not be easy. But autism is not an excuse.

My daughter is and always will be much more than a diagnosis, but autism is a part of her story. It is a part of who she is and who she will be and it is why we will continue to go to therapies, act out social scenarios, and talk about emotions. It means we will always have an IEP in school. It means she will see a neurologist throughout her childhood. It means she will meet more therapists and learn things differently than her peers. It will be threaded into the background of so many of her life experiences. She will grow up and become whatever she wants to be and she will always have me on the sidelines cheering her on.

As for me? I am an emotional person, but I usually manage to maintain a stoic public presence thanks in part to my job, which has provided me plenty of opportunity to be expressionless in the face of public criticism. But when it comes to my daughter? All bets are off. I am a mess of emotions and I will fight tooth and nail for her (but mostly with words and decisions). I will fight for inclusiveness because I believed in it long before I had a daughter that would be in need of it. I will cry a lot. I will cry when she struggles, when I feel defeated and at a loss as to how to help her through whatever challenge she faces. I will keep celebrating her firsts, her accomplishments, and all her creativity.

I will smile on the good days and dig deep for more patience on the not-so-good days. I will hug her when she lets me, hold her when she needs me to, and I will make sure she knows that I believe in her. Mostly, I will always wish for a glimpse at the world through her eyes so that I could understand her experience and the ways in which she sees the world.


24 thoughts on “It’s Autism

  1. A) Fuck off to the lady who mentioned reproducing a defective child or complaining at summer camp! I cannot imagine they are not grateful every single day/ minute of her life that her child is “normal”.

    B) Also, what is normal in today’s world? I don’t really know.. The way man is behaving today is certainly not what we were taught or were the morals of society when we were growing up, so who knows! But I fear the intolerance and how it will affect children who are different.

    I know how much every parent wants to have their kid to just fit in, and that is going to be a hard journey for your child and you. I am sorry that you are in pain, and I hope, someday, (hopefully sooner), your daughter is able to share with you her life/thoughts/joy/emotions in whichever way she can.

    sending you lots of love. take care.

    1. A) My thoughts exactly. Thank you for saying it.
      B) You are right. This world keeps getting scarier. The intolerance is heartbreaking and surreal.

      Thanks so much for the support and kind words. It is much appreciated.

  2. Aw, that is a tough diagnosis to hear. Yet all through reading this I was reminded of a poem/story we read in my special ed. classes in college called “welcome to Holland.” Have you ever heard of it? ( I do, however, love your attitude. Sure it will be tough but your daughter is blessed to have you in her corner cheering her on, finding her the help she needs, and celebrating the wonderful creature I’m sure she is.

    1. Thanks so much! I have read that. A friend sent it to me shortly before I took her for her diagnosis. It resonates beautifully.

  3. I think you have a lovely view of things.
    Autism isn’t a label that means that your daughter’s life will be one way or another. It is not who she is. It is a disorder – one that will make some things much harder for her and may even make some things much easier.
    Prayers to your family as you process the news and figure out what this diagnosis means for your family and you daughter’s care and education.

  4. This! My exact thoughts. Especially the first paragraph. We’re still investigating. Maybe he is, maybe not. Process is slow. They don’t know. He’s too young. Etc. We’re lucky in our borough, we don’t have to have a diagnosis to have access to special help. But I… I need a yes or no. It would help me to close the chapter of wondering what if… and just deal with it. #fabfridaypost

    1. The process is so slow. It’s agonizing. She was getting all the services she needed until she turned 3 and a diagnosis was more important. I did so much out of pocket thinking maybe just this will do it, but it became clear that I needed to just take her and get an answer. It is helpful and has me more focused and able to advocate better as she gets older. Long winded answer here, but you can relate so I know you get the run-on thoughts about all of it. Thanks for stopping by for the #FabFridayPost

  5. I’m always taken aback by comments people make about my kids, and they do not have autism. People will always have something to say. I think you are brave, for accepting this news the way you did. Things won’t be easy, but when is the world ever easy. I’m sure your child’s future will be bright because of the amount of love and support from you. Wishing you all the best. #fabfridaypost

    1. People really have a lot of nerve sometimes right? Thanks so much for the encouragement! #FabFridayPost

  6. I love reading these posts on how moms (or dads) feel when faced with such a diagnosis. I can’t imagine the strength required to just push on some days when things seem “too hard” or “out of control”. Reading the thoughts, feelings, experiences, and – ultimately – life stories of people who are learning about autism (or other disorders) is inspiring to me, and hopefully to others. There is no better way to teach people than to literally talk about these things. Thank you for being brave and sharing your thoughts and feelings.

  7. I can’t believe that someone would call their child ‘defective’ after being diagnosed with Autism, that is disgusting and she shouldn’t even have children! #fabfridaypost

  8. I’ve gotten grim news from the neurologist before. It takes a while to wrap your brain around it and assimilate this new information. It sounds like you’re doing well with it. Your daughter is lucky to have a mama who will fight beside and for her.

  9. Many people in this world, today, have such a small and shallow viewpoint where any difference is not accepted or even acceptable. Your journey is harder than you all deserve – but perhaps you found each other as mom and daughter because your light shined bright enough for her to see, even from her special world. Shine bright my friend. Big hugs all around. xoxo #fabFridaypost

  10. People can be so cruel sometimes. This makes me sad. There’s already “autism” as a label for not being normal but society should be made more aware of what autism really is. Some people will have no clue how to handle a stranger with autism, but with more awareness – it should and hopefully bring a much more understanding to those who are actually living with autism. I’m glad that you have seek professional help and that it is helping her to cope with the world that does not understands her. You are doing a great job Briann. It’s hard, but you can not denies she is an absolutely a brilliant girl. Big Hugs. xxxxx #FabFridayPost

    1. I totally agree Su, she is brilliant and funny. I am a really lucky mom and hopefully along the way we can open up people’s hearts and minds to being more inclusive. #FabFridayPost

  11. My daughter has Type 1 Diabetes, and while it’s soooo different from autism I can relate to a lot of those feelings. It’s hard to always be figuring out how to keep her included in all the same activities her peers get to do. Sometimes it just isn’t possible and it breaks my heart for her. Also – what’s with people asking how “they got it” I mean. Does it even matter? #FabFridayPost

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