Ignorance About Her ‘World’
“Aren’t they lucky? They get to live in their own little world. They don’t have to be bothered with what is around them like we do… It must be nice!”
WHAT!?!?!
Yep, that is the response I got during some small talk from the cashier at Star Bucks this morning, after learning I had a daughter diagnosed with autism.
I am sure she wasn’t a complete idiot, because she quickly registered the face expression I had and I am sure I was glaring at her with all the bottled up contempt I have felt for the past five years. She abruptly started talking about her autistic nephew and how he eats toilet paper and how you cannot talk loudly around him… somehow sharing her story was supposed to make the sting of her comment go away.
Was she just trying to relate? I don’t know, frankly, I don’t care. Here is my take…
Firstly, I am not going to sugar coat this… This will have graphic language! I often pride myself on being heart-centered and helping others focus on the positives on this difficult journey… sometimes I think that a small glimpse of hope is what parents on the spectrum need to hear and I made that my mission… to inspire, educate and offer hope to mothers, fathers and siblings… but today I am setting that aside to let others (on the other side of this spectrum) know the nightmare we live!!!
Like it or not this is the attitude of many people in our communities. They see our Children and they have the outer appearance of neurotypical children, so there is this misconception that these kids are well. In fact, I think that many people that are indirectly affected by autism have this attitude as well. (Grandparents, aunts uncles, friends, ministers, therapists, teachers, neighbors…)
Another woman once invited me to participate in a fundraiser for a local camp for kids with ‘serious illnesses’. So, I asked if they had services for kids with autism and her response knocked me off of my seat; this camp apparently was for the 16,000 children in Ohio “suffering with serious illness who have no current camps to attend”.
You know serious illnesses like asthma, arthritis, cancer, heart disease…. NOT AUTISM.
It isn’t like you’re dealing with cancer or a debilitating disease, right? Well, sometimes I think THAT would be easier… your fate is presented and there is a clear cut plan of what to do. In many of our cases, we have to go through life guessing what is going to work best of our child, because no one has a fucking clue what to do with them.
No one is doing unbiased third party research… because no money is to be made.
No one is advocating for action against the discrimination they receive from insurance companies… because it will cost too much to treat.
No one is planning for their future… because they don’t know understand that this is a disability and it will affect them long after the parents are gone.
The day to day challenges are dismissed as behavior problems… no one sees that it IS a serious illness; you know a medical condition….
Yes, Autism is a medical condition that prevents my child from wanting to wear clothing… no amount of coxing is going to solve that over night!
It is a medical condition that prevents my child from having functional speech… can your child tell you if someone sexually assaulted her… mine can’t.
It is a medical condition that causes her to not have interest in what the kids outside are doing… she is not in her own world Miss Cashier she is isolated in a medical condition that won’t release its grip.
It is a medical condition that gives my child the never ending need to complete an entire cartoon episode or movie scene before she can lie down at night and sleep for a few hours before waking up because, well, I don’t know why she wakes up…. She can’t tell me!
It is a medical condition that keeps me up at night worrying about her future… will she go to kindergarten, college, get married, or have kids??
It is a medical condition that makes me call people and say don’t name my child in your will… that would really fuck up her services and treatment plan!
It is a medical condition that prevents her from sitting down with us to eat dinner… missing out on our conversations, laughter, and bonding.
It is a medical condition that makes her crave the same foods presented the same way every day… and, yes, even string, toilet paper, and dirt.
It is a medical condition that prevents me from getting a job… I have to take her to Occupational therapy, Music therapy, Speech therapy, Physical therapy… to the neurologist, geneticist, psychologist… the appointments never end.
It is a medical condition that creates fear about what will happen to her if I die… so; I have just accepted that I cannot die… I must out live my daughter so I don’t have to worry about what will happen to her, because it kills me inside to think about her future. No one in my eyes is qualified to take over.
It is a medical condition that puts my other daughter second many times…will the create anger, resentment, or rage?
It is a freakin’ medical condition!
No, my daughter isn’t lucky to be in her own world. I know she looks like a normal 5 year old in the cart as I push her through the rare trip to the store, but I work daily and, often, through the night at figuring out how to pull her into our world.
I want to know what she thinks, loves, knows, remembers, cherishes…
I want her to be a part of my world, her sister’s world, her father’s world, THIS WORLD!!
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@Brona – Excuse me for saying this but that’s pretty fucked up! Disease or no, i think all kids should be wanted and loved, no matter what they’re ailment is. Everyone is different, no one has the right to judge.
EVERYBODY is in their own little world, we all have our own version of the world at large. I think your daughter is fine. People, my mom especially, still refer to me as “that girl who’s in her own little world,” but that doesn’t mean I don’t have struggles of my own. Albeit, I don’t worry too much about paying the bills, I worry about how often the carpet needs to be vacuumed and if I do such and such on saturday, then I’ll have to stay up late to do my two loads of laundry. That is normal for me and your daughter will find her own normal too
Some folks are sitting on their brains…and it’s NOT you!!
I would write to Starbucks and complain, also write a comment on the Starbucks Gossip blog.
How difficult. 🙁
I’m really sorry. My brother, two years younger than I am, was diagnosed when we were both very young. I’m not going to lie. In fits of spite, I’ve said he’s lucky he doesn’t have to clean up his own messes and act like a normal person. That’s about 97% sibling rivalry/jealousy crap though. I don’t believe he’s lucky. I believe it sucks for everyone, including him.
And people do see… I can assure you of that… maybe not as many as we would like… But many do and are fighting, spend their lives fighting to help children and adults with autism. But yes the failure to truly help is infuriating. I’m going to quit rambling because I’m certain my words are in no way helping… There will always be far too much ignorance in the world, and not enough educators.
I understand what you are saying… I do… And I can see that your life has become very difficult due to your daughter’s medical condition, and her’s is lacking a lot… but don’t be too hard… I’m sure you can understand what she meant… maybe… then again maybe not… I think her point was that they can be happy, enjoy things… even if they appear to us as miserable, even if it makes us miserable… I’m sorry…
Thank you for showing us a glimpse of what it is like.
We need to be educated.
wonderfully articulated post. i hope you have success in your treatment plan for your daughter 🙂
Thank you for writing this. My son was diagnosed twelve years ago and I experience at least half of the feelings you wrote about on a daily basis.
My mouth dropped opened, too!! There was some recent post (maybe here) asking if there should be prenatal testing for autism, etc… I cannot comprehend this line of thinking. I am so sorry that that person said that to you. <<>> @Brona –
I was told once by a grandmother walking her grandchild, after I explained to her what Landau-Kleffner syndrome is and why my son cannot tell her what his name is:
” Too bad they didn’t do a prenatal test to find out before he was born, so you could have aborted him.”
I had no answer to that. I just stood there with my mouth open and my hands numb.
Sometime I feel like the world should be educated about these things and then sometimes I don’t. It hurts. You never know when a loving-looking grandma turns into a big bad wolf.
I hear you. It is so hard to constantly deflect the idiotic comments of others with positivity and unemotional education and advocacy. I think it is healthy to get it all out. It makes you better for your child in the long run. Keep spreading the positivity – it WILL pay off. 🙂