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

What No One Tells You When Your Child Is Diagnosed With Autism #autism #autismmom #specialneeds

Every autism mom I know remembers the moment she heard the word.

The moment the doctor confirmed what somewhere, deep down inside, she already knew.

The moment the diagnosis was confirmed.

The moment it became official.

Your child has autism.

What No One Tells You When Your Child Is Diagnosed With Autism #autism #autismmom #specialneeds

That moment is a big one in our lives. It’s the moment that marks no turning back.

And a new life, whether we like it or not, begins.

It feels powerful and heavy.

And it is.

It feels life changing and irrevocable.

And it is.

It feels like big things are on the horizon. Things like therapies, and educational decisions, and medications, and long-term care plans, and social skills groups, and insurance battles.

And they are.

But what no one tells you is that, autism will affect you and your child most significantly, in the most basic aspects of your lives.

What no one tells you when your child is diagnosed with autism is that the hardest part is in the everyday details.

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

Eating

The sensory experience associated with eating is, and always has been, tough for my son. Textures, smells, conversational noise, swallowing, food temperature – all of this makes mealtime difficult for us.

For me, it means I dread the next meal. I dread making something I know he will likely not eat. I dread trying to get him to sit as comfortably as possible and eat with us. I dread feeling like a terrible mother for not doing it better, requiring more – or conversely for requiring too much and causing pain.

For my family it means an unfair set of rules for one child vs. another, chaotic dinner times, and mom rarely actually sitting at the table.

For my son, it means the worst of it. He deals with this every single day, every single time he needs to eat. He dreads meals more than I do. He is anxious the minute someone asks him if he is ready for breakfast, lunch, or dinner. He panics when we plan to go out to eat. This is every single meal time of his life.

Bathing

The sensory issues also affect my son’s ability and desire to bathe. Now, I recognize that no almost 13-year-old boy really enjoys bathing, but this is different. For years, my son has avoided a bath or shower, because of the way it makes him feel. The adjustment to water temperature, the feeling of needles on his skin when the shower water hits his back, the chill when he is finished, all of it is just too much for his sensory system.

We spend money and time on this. We buy any bath product he is interested it (thank you Lush). We reward him for regular showers. But, like eating, it is always there.

I am always conscious of  how long it has been, or dreading the next bath.

My son is anxious all day, when he knows tonight’s the night.

Bathing is a big deal here.

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Trying out a new body wash. Seriously, the people at the Lush store near us are wonderful!!!

Toileting

I want to be careful how I approach this one…mostly because my son is getting to the age where this is really embarrassing, and I want to respect that.

And, I know if you asked him, he would emphatically share his stories of how difficult a bowel movement can be.

Chalk it up to another sensory experience that is overwhelming for him, but this a part of our everyday autism life that I did not expect.

For years, I have been conscious of how long it has been since he last… you know. (I am really struggling on this one. I want to just say pooped, but it seems juvenile. I thought about using BM or defecate, but I never use those terms in real life. I tried to google synonyms for it. A word of advice – don’t google synonyms for poop.)

We monitor his bathroom habits every single day, and have for years. It’s just another part of his life that is a constant concern.

This struggle, combined with the occasional, how did I end up here messes, and the intense sensory avoidance, are a part of this life that we rarely talk about when it comes to older children on the spectrum.  But that doesn’t make them any less real.

Sleeping

Sleep is elusive around here. It has been since my son was born.

Just this week, he couldn’t get his brain to quiet down enough to fall asleep. He was literally awake and anxious all night long. He finally fell asleep around 5:00 AM and then woke at 9:30 AM, to a day filled with tired meltdowns. This happens from time to time.

But every night is a kind of struggle for my guy. He says that he never really feels like his brain stops. That even when he is sleeping, he still feels half awake. We have taken some steps that have helped, but every single night, both he and I question if sleep will come.

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Please don’t misunderstand me – this is not a list of complaints or a plea for help in these areas. In fact, as the years have passed, we have been able to adjust our expectations, and come up with some semblance of a plan to help him in these areas.

This is about what I didn’t expect. This is about what still surprises me about the day-to-day lives we lead.

Eating, bathing, using the restroom, and sleeping are every single day things. They happen over and over again. We manage them over and over again. My son deals with them over and over again.

What I didn’t anticipate is how much the everyday matters, when your child has autism.

It is in the everyday, that we struggle.

It is in the everyday, that we feel defeat.

It is in the everyday, that we learn.

It is in the everyday, that we make progress.

It is in the everyday, that we love.

It is the everyday, that we live, and live well, with autism.


For more about our everyday struggle and everyday joy raising a child on the spectrum, I invite you to share in our journey through my new book – Everyday Autism.

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This post was originally published on Not The Former Things in 2015. 

6 thoughts on “What No One Tells You When Your Child Is Diagnosed With Autism

  1. Yep. Two of my three kiddos struggle with the same things to varying degrees. We feel your pain, frustration, anxiety (well, not yours, our own, but we’re in the same boat 😉).

    And as for the p word…not a mother on here hasn’t seen it or heard it over and over again. It’s perfectly acceptable to just say poop. It gets easier with practice. Poop poop poop! First question of the day? Did you have good dreams? Second? Did you poop today? Yeah, it’s ok to just call it what it is.

    1. Ha! I love it. With my kids, it is always poop. Poop all day and all night. But when writing to other mommas, it felt strange. Thank you for encouraging me to just say it like it is! 🙂

  2. Thank you for writing and sharing this. I too have every one of these daily struggles with my child, and cried while reading this. When you find out you’re expecting, all the way to the end, you never once think that *this* will be your life. Nobody expects to have a special needs child, and reality shifts so quickly and your life will never be as you imagined it would be.

  3. My grandson (I’m a live-in homeschooling grandma.) who has high-functioning but speech-impaired ASD, is only 8, and I don’t think I have ever seen him embarrassed yet. But we do have a poop issue. He poops at least 3 times a day normally, and then has fairly frequent bouts of diarrhea due to food allergies…and we have never yet gotten him to do it on a toilet…not one time. He doesn’t mind peeing in the toilet, but pooping is a very private matter, and announcing that he is “YUCK” is a loud and public one. 😉

  4. One more everyday battle I would add to the list is brushing teeth. This is a big deal with my son, from the flavor of the toothpaste to losing baby teeth. He hates it but I know if his teeth are not taken care of now we will have even bigger and more expensive struggles later. I pray for patience and strength for me and all the care takers of autistic people.

  5. Have you tried melatonin to help with the sleeping issue? It worked for us along with other things. I have a son who was diagnosed back when doctors were not sure what the diagnoses were. It made it very hard to get anyone to understand (including teachers so I finally just pulled him out of school and homeschooled him while working as a single mom). He is now almost 30 and still struggles in life but we just keep trying to guide him.

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