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What I Wish Someone Had Told Me When My Son Was Diagnosed With Autism

Although it’s been years, it seems like yesterday.  This is what I wish someone had told me when my son was diagnosed with autism. 

It’s been eight years since my son received his autism diagnosis

As I look back at all the progress we’ve made, and how much our life has changed for the better, I am so very grateful.

As I look back, I can also see that many of the things we learned, we did so by trial and error. It wasn’t a doctor, or one specific book, or another expert – by God’s grace it was just us, trying to help our son and figure out how to live that educated us the most.

It really was that simple and that difficult. We figured it out as we went along.

When My Son Was Diagnosed With Autism

In the hopes that it might help other moms, and because I would’ve loved to have heard this back then, I am sharing today the 5 things I wish I knew back then.

What I wish Someone Had Told Me When My Son Was Diagnosed With Autism

1. The Behavior Has A Trigger

I repeat, the behavior has a trigger. Just because I had no idea what was causing it, doesn’t mean there wasn’t a reason for my sons increasingly violent, agitated behavior. After finally getting the diagnosis, it all started to make sense – especially the extreme reactions to things that seemed effortless for other children (including his brother).

Basic everyday occurrences like putting on socks, wearing shoes that were not crocs, touching grass or sand or dirt or cement with his toes (or hands for that matter), chewing meat that was a little on the tough side, smelling anything at a restaurant, on a plane, in a public restroom – these things had been causing anxiety and meltdowns for years.

It’s very simple to write the above paragraph now and correlate these triggers to the melt downs. A year ago however? Totally different story.

I have no idea what is going on. He totally lost it today when it was time to get ready for class. He threw his game system at me and started trying to tear his clothes…before I even told him he needed to put his socks and shoes on. My poor boy. What is happening?” was a regular conversation I had with just about anyone who would listen.

I didn’t make the connection, or if I did, I didn’t totally trust it.

I wish someone had just looked me in the eye and said, “He is reacting this way for a reason. Ask him, when he is calm. Study him, when he is melting down. The answers are right in front of you. You can figure out what is causing some of this.

2. Lycra Sheets

Occupational therapy has been so, so good for my son (read more about his therapist and our approach here). One of the things we learned very quickly in OT is that my boy loves the feeling of Lycra on his skin. I have no idea why, but it doesn’t matter. Lycra soothes his over reactive sensory system better than anything else we have tried. Therefore, we love it.

When his therapist told me there were sheets made of it, I immediately did some research and intended to buy a pair…until I saw the price. Oh my goodness. No way.

Instead I went to the fabric store with a 40% off coupon, bought yards of it, and tied it around his bed.

It changed our world.

Not only has it helped him relax and sleep at night, but when things are loud or overwhelming or he is just having an off day, he retreats under the sheets for a little while. It calms him down and when he feels better, he comes back out with us. This called self regulation my friends, and it is awesome.

3. Dress For Success

When I go to our various doctors appointments and therapies, I have found it helps to dress professionally and try to do my hair and make-up (OK, here I stress try.)

Why? It may not be fair or right, but I find when I am dressed professionally, the doctor is more likely to treat me as an equal. More importantly, if I am concerned, my concerns are taken more seriously.

The times when I have gone in sweats and hair all a mess, I find I am more or less given instructions, rather than being treated like an important resource. (This has also been true at his younger brother’s appointments too.)

Again, it may not be right, but it works and I wish I would’ve figured it out sooner.

While we are on the topic of dress, I also wish someone would’ve told me it is just fine to allow my son to wear crocs and only crocs for a year straight, but dress and the child with sensory processing disorder is a totally different post

4. Alone Time Is OK

It used to make me anxious that my son would spend so much time in his room. He is usually reading, but for some reason that didn’t matter. I thought it meant he was withdrawing from the world and his family – that it was only a matter of time before he started dressing all in black and researching bombs on the internet.

The truth is, my child just needs more time to himself than I consider average. He is an introvert to the extreme. After being out and about with people (including interactions with me), he needs time to unwind. He needs time to pursue his interests, to immerse himself in learning more and more about all of his favorite subjects.

You know what? He almost always comes out refreshed and ready to once again engage. I have learned to not only respect his need for time alone, but appreciate it. It makes him more capable when he is interacting with us, and I get a little bit of time one on one with my youngest.

5. There Is Blessing

Oh boy, this one is big. When my son was finally diagnosed, I was grief stricken and a little panicky. I was grateful, but more because it gave us resources to help my son.

I had no idea that  years later I would say there is so much blessing to be found in this life, even with, sometimes especially with this diagnosis.

There is no way I could’ve know the peace and joy that comes from simply having my child give me a hug, or enjoy a play date with his friends. I would’ve never counted cooking with my son in the kitchen with me, or shopping at the farmers’ market together a spirit-filled experience, but I do now.

What I wish I would’ve known back then is that all of this really is purposeful. It’s ugly and messy and sad sometimes, yes. And it is also fun and new, and interesting and challenging and loving and joy-filled.

This is the life we have been given.

What I couldn’t have possibly known then, is how grateful I am for all of it.

For more ideas, support and encouragement:

What No One Tells You When Your Child Is Diagnosed With Autism

What I Want You To Know About My Son Growing Up

Getting The Diagnosis: What It’s Really Like

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  1. After a very long, tough weekend with our Austic teen daughter your post is exactly what I needed to read. I wish I knew these things when we were searching for our diagnosis. These are great reminders no matter where you are in your journey. Thanks for sharing!

    1. Thank you for sharing your experience and for being so kind. I am so sorry it was a tough weekend (and I completely understand the weariness that small statement implies). Praying for you and your daughter tonight.

  2. It’s amazing what you can learn in a year. I find myself thinking about how absolutely crazy I was with a newborn, and how much I know now that I wish I had known then. But, it’s about the journey.

    Also, tell Sourdough that I appreciate how organized (by shape) his bookshelf is. I have to have mine organized from largest to smallest, too!

    1. I will tell him! He LOVES his books and the bookshelf. It is the first thing he shows people when he gives them a tour.
      Snuggle your little one for me!

  3. Awesome post dear niece, I love how you find the joy in everyday. It is there if you look for it, and some days it is easy to see and others, not so much!! But there none the less!! Love to you all!!

    1. Love right back to you!!! Thank you for your encouragement and support.

  4. I’m glad you’re grateful for it. I hope more people can reach that point.
    Also, I know it doesn’t really matter why, but the reason he probably likes the feel of Lycra is the smoothness of it. A lot of fabrics are rough and feel like sandpaper. Most people don’t really feel the difference until they move around a lot in them, which is why people don’t like running in jeans. But when you have autism, it can feel like that running in jeans feeling with even cotton fabric.

    1. Oh my goodness, thank you so much for sharing your perspective. The jeans analogy makes perfect sense.
      Please feel free to share any other thoughts you may have, any time. It is really, really helpful and encouraging to us momma’s.
      With love and respect,

      1. No problem. I like using analogies because they’re easy to understand and a lot of times it makes the behavior make more sense.

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