There’s this thing I’ve been reading about. Seeing articles shared. Hearing people say “well I hear now that kids can grow out of autism”.
These things are angering me. ANGERING ME.
I don’t know if Silas would have an autism diagnosis if he were reassessed. I’m going to say he wouldn’t, I think it would be more like PDD NOS or something. I’m going to say that to a lot of people he may look like he’s grown out of it.
When you think of a person growing out of something you think of a young boy growing out of his lego – moving on to more grown up things. It’s a natural transition and with most people it happens with little no zero effort on anyone’s behalf.
Here’s what “growing out of autism looks like”
- hundreds upon thousands of tears from the parents
- about 80 trillion melt downs
- 30 bottles of antidepressants – typically for the mom
- hundreds of miles on to the car driving the child to and fro therapies
- broken noses, scars, bite marks, bruises etc – for the people in contact with the child
- about 365 anxiety attacks a year for the parents when you’re in the throws of it.
- hundreds of hours of having people come in to your home to do therapy with the child.
- bottles upon bottles of various supplements
- learning how to teach your child to talk and using those techniques 24/7
- hours upon hours of reading and researching
- signing your name on hundreds of different forms
- holes in your walls
- learning to be more patient than almost humanly possible but you do it anyway
- learning to not lose your cool when your child hurts you
- glares and comments from strangers in public
- judgement from people close to you and strangers
- disagreements with your spouse on how things need to be done
- being stressed about money and feeling guilty when you buy yourself anything because it should go to therapy
- planning fundraisers
- feeling so overwhelmed that you feel like you’re spiraling down into a deep dark hole
- copious amounts of wine
- knowing what “sensory integration” means and applying it to your life often
- sleepless nights
- constant worry
- trying different kinds of diets to see if it will help your child
- feelings of guilt “did I make them this way?”
- fighting with the govt to get disability tax credit for your child
- the child having to go through hours of therapy every single day learning all the things that don’t come naturally to them
- the child having to learn to cope with a world that doesn’t cater to them
- the child having to bend and go against their own nature so someone can deem them “fixed”
- the child having to work on muscle groups that have a hard time forming like ours do.
- the child having to actually want to work
- the child having to be constantly engaged to keep them in our world
- the child having to learn to communicate with other people
- the child having the correct pathways in their brain so that they can actually make the connections they need
- the child having a parent willing to do what it takes to make this all happen
- 40 hours of various therapy a week
etc etc etc etc
Growing out of it my ass!! I want to give whoever thought of this “growing out of autism” concept a proverbial eff you. It’s called doing what it takes. It’s called children being diagnosed earlier so they get the therapy they need at the right time. It’s called having parents that will actually take the time to LEARN about their child. It’s called having a child that wants to learn and CAN learn. It’s called having the right DNA. It’s called a whole lot of hard ass WORK and a community coming together on the child’s behalf.
Fellow autism parents – keep it going. Add to my list. What’s it called to you? How is it looking in your home?
**click photo for source
Thank you for this post. Saw it on my Twitter feed and can totally relate. My son was first diagnosed by a psychologist in May 2012 and another doctor diagnosed him with PDD-NOS in October. Don’t know if it was a good thing for me to get the second opinion or not but your list is so accurate and happens in my house a lot.
Another thing to add on the list is dealing with insurance. It becomes a pain just getting reimbursed or in some cases, for it to be approved.
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Oooo yes, that. We don’t do that so much in Canada but there’s still annoying insurance things if you’re doing things extended benefits cover. Like chiropractic or something.
I know a woman who posted on Facebook about hoping her son was “growing out of being autistic”. When my husband and I read it our reactions were identical: “What the hell?” Our son is apparently neurotypical so we don’t have any direct experience with what you’re describing, but we have tried to stay informed and use common sense in our thoughts about autism. As far as we can tell, NOTHING points to it as being something a child simply transitions out of with age, and this idea does not seem healthy. In fact, it seems downright dangerous.
She obviously hadn’t done any research yet. That would be like growing out of cerebral paulsy or growing out of being a girl. Makes no sense to me.
It doesn’t make sense to me either! This was a couple years after first claiming he had autism and taking him to doctor after doctor. It took a long time to get any kind of diagnosis, so who knows. There are so many misconceptions and prejudices about autism which doesn’t make sense either considering there are so many reliable resources out there to educate oneself with (at least enough not to make dumbass claims like “they can grow out of it”).
Maybe she was innocently throwing a wish out there. Like wishing he never had it in the first place. Lets hope.
Wow! Thanks for posting this. You have worked hard – I can’t even begin to imagine what it is like!
Autism looks so different for everyone!
I’m looking at this from a very different perspective. My “foster son” turns 32 tomorrow and has autism. I know I’m not a real mom of a child with autism, and I don’t fully understand the struggles you have with a child who has autism, but I understand the struggle in a very real way from the adult years. It makes me angry when I hear that children just grow out of it. That hasn’t been my experience at all…he isn’t growing out of it. He IS changing, learning and growing, just like the rest of us – it’s SO slow. It is a constant changing experience, every year (month…day) with him is different. I still don’t understand autism and probably never will – I haven’t lived with this every day since he was born, but I have lived with it for 13 years. His parents have poured their entire beings, money, time…every possible therapy…into him hoping that he will grow out of autism – unfortunately it hasn’t worked and they are crushed.
So, this year I have one birthday wish for him…that we will stop trying to “cure” him, and will start accepting him as he is – a 32 year old man – and let him LIVE life.
That was awesome Adel!
I absolutely love this and totally agree. “Grow out of it” my ass! My son is only two and does 25 HOURS a week of therapy at the moment. If he’s considered “typical track with his peers” by age 3 it’s not because he “grew out” of anything. It’s because me and a WHOLE TEAM of therapists bust our butts working with him intensively every day. Can I share this blog on my facebook? I’d love to let my family/friends read this. Some of them could use a lesson on this matter. 😉
We are experiencing the same thing on a smaller scale with severe speech delay and slight developmental delay. People keep saying “It will just happen! And then you’ll wish he’d shut up!” After he starts talking, I’m already prepared for people to say “See? He just wasn’t ready yet.” When actually… growing into it involves a lot of things on your list. And a lot of intervention. People don’t seem to think that speech delay is really a big deal. And compared to what some others are dealing with, it isn’t. But still… there is something sad about having a four year old that I’ve NEVER had a conversation with. I can’t even imagine what it would be like for him to just tell me something… All that to say.. YES! I AGREE! PLEASE STOP POSTING ARTICLES AND REPORTS STATING THIS!