It’s a diagnosis most of us know by name, but we don’t really know what it entails.
We may think it’s someone who rocks back and forth and is kind of asocial, or maybe you have seen rain-man or what’s eating Gilbert grape and think that’s how autism looks.
The truth is it can be all of the above, it’s a wide spectrum.
Before my daughter received the diagnosis I didn’t know to much about it either.
From the time Grace was born she was different. I felt it in my bones. She didn’t react like everyone said she would. She rarely cried when she was hungry, and she didn’t even like being fed most of the time. But I was a first time mom. So what did I know.
As Grace grew older feedings became worse and worse. My whole life revolved around feeding and it was a huge stress factor. We found a chair she liked sitting in to take her bottle and that was about it. Yes she was bottle fed, because breastfeeding was to much of a struggle and even though both, myself, my husband and our doctor, said it was the right thing to do the guilt still gnawed at me. I kept telling myself around 6-7 months we would do solids and soon struggles with feeding would be gone. But solids didn’t come naturally either and Grace wouldn’t really have any of it. She likes taking her bottle (“liked” it was still a struggle, but at least most times she would dream fed and I knew she got what she needed). Around 6 months she had a feeding study done, and it showed no physical reason for the issues.
By 10 months she was enrolled in early intervention for feeding therapy and I had high hopes. She was also meeting most of her milestones..a little late but they were being met. I started looking at autism for some reason. I still had that weird feeling in my bones. Some of the signs were there, some weren’t. By the time my little princess turned a year I was 5 months pregnant with her little brother and starting to worry about the feeding situation. We were told “just make her.. they will eat when they are hungry” We’ll Grace did not eat, in-fact she did still not show signs of thirst or hunger. And seemed to be content not eating at all. Her therapy went okay, but it was a constant progress and regress situation back and forth.
By the time our second was born it was clear bottle feeding was still something she needed. I managed to bottle feed to babies at once and got pretty good at it if I may say so myself. Our little boy was a good eater from day one. His love for food, showing us sign of hunger, how he progressed and kept progressing made it even more clear to me that I wasn’t just being a worried mom and that something was different with Grace. Talking and making sounds was also an area of concern as she seemed to regress with. For a while she stopped talking all together. When I brought it up with her speech therapist I was told no way she had autism. So I thought it was all in my head. By 24 months I asked our pediatrician for a referral and we got in super fast with a pediatric neurologist who fairly swift and certain diagnoses our girl with autism. At that point he also told us she might never talk. That part broke my heart.
The autism diagnosis was honestly a relief as I had suspected it for a long time. But the mere thought that my daughter might never talk kept me up for many nights. We proceeded with trying to get her in to more therapy, that proved harder that I thought. We were met with people not believing the diagnosis and just brushing it off. Some places she was to young to get into and other places simply didn’t offer what we needed. As her younger brother started babbling suddenly so did she. And over months and months of patience, practice sign language, speech therapy etc. Grace is trying to communicate and while it’s not as advanced as someone her age, we are so proud and optimistic. We saw her neurologist for a follow up and he did mention she does have better eye contact than other children with autism, but that just means she is progressing and she is on the higher functioning part of the spectrum.
There are many difficult parts of being an autism parent. Not being able to communicate with your child, seeing then frustration in their eyes. Seeing them struggle. The meltdowns causes by a change in routine that you couldn’t prevent, and all the little ticks and stems you have to get use to. But the hardest is hearing people say “oh she just needs to learn. She just needs to do this and that” knowing that professionals don’t grasp the struggle my little girl faces everyday and assume she is just doing it because she is misbehaving.. now that.. that’s the hardest part.
My advice is find a dr you trust, don’t be afraid to change drs, therapist etc. it’s your child. They see them once or twice a week. They don’t know them like you do. And get parent training, we are currently enrolled in parent training and it’s providing us with tools to handle the hard times and learn to understand our daughter.
I’m currently expecting our 3rd child, and while I know it will come with challenges I know God meant for us to have this new little one. I would say being a big sister has helped Grace progress a lot.. and I hope and pray that she can continue to progress and grow. And yes we still bottle-feed. After 2.5 years it’s not as bad :).
Autism has many faces, many ups and downs. Often the struggles are shared -But it’s not all struggles.. it’s beauty in seeing growth, and it’s supporting your child in new ways. It’s learning a patience I believe we can only receive from God. And it’s loving your child unconditionally the way only a parent can.
-Lilly Clausen, @andlilly