I don’t know about you, parents, but do you find now that your child has an autism diagnosis, whatever medical issue arises is attributed to autism?
Tyson has had acid reflux since about 8 weeks old. It is chronic and persistent.
When he was younger, he was medicated for it many times but it never went away.
My family doctor treated his symptoms but eventually our developmental paediatrician recommended we see a specialist.
“It’s probably related to autism.”
“Kids with development issues sometimes ruminate.” (Rumination is the act of voluntary regurgitating food and is known to occur in individuals with developmental delay.)
Each time Tyson was seen by the specialist, this is what he would say.
However, I didn’t see it quite this way.
What if it was not “autism”?
What if it’s chronic acid reflux?
What if, this was truly causing him discomfort and pain daily?
He can’t tell me he is in discomfort, so how do I know for sure?
So the last time I took Tyson to see the specialist, I said, ‘are you sure?’.
Are you sure it’s rumination and not reflux?
Because we would not let a neurotypical child suffer like this.
So …. he agreed to do a scope.
I’m not sure if he agrees with me or if he is just tired of listening to me, either way we need to get to the bottom of this.
I also thought Tyson needed prescription glasses.
He squints, a lot!
“It’s probably autism”, I was told.
“Visual stim”, I was told.
But it may not be.
How can a child learn in school if he can not see properly?
So I took him to an optometrist.
Before going, I researched which optometrist was autism friendly.
Yes, we parents of autistic children need to check these things.
Not everyone has the skills necessary to help our kids. (Not everyone treats our kids with respect and dignity either.)
We found a lovely optometrist who is excellent with working with children on the spectrum.
I suggested we start with a visual acuity test, as Tyson knows his letters and can use his communication iPad to identify them.
Tyson could identify the beginning letters but as the letters got smaller, he got it wrong or stopped answering.
The optometrist suggested we dilate his pupils in order to know for sure if he had a vision problem.
So, as difficult as that was, we did it.
The optometrist then shune a light in his eye while holding a special lens up to his face. Depending on how the light reflects back, indicates if a visual issue is present.
“No prescription needed.”
Honestly, this optometrist was wonderful. He was patient, caring and treated Tyson with respect.
But when I questioned him on why he got the ‘smaller’ letters wrong and he as often squinting when watching TV, he blamed autism.
“Maybe he is having trouble focusing on the letters. Maybe he likes how it visually looks when squinting.”
However, I was not convinced.
The school had mentioned that Tyson would not copy his agenda from the board but if written on a piece of paper and put on his desk, he would type it into his chromebook. They thought he should get his eyes checked.
At home, Tyson was always stealing Lincoln’s glasses and wearing them.
One evening he even requested on his communication iPad “Lincoln bath glasses”. He knew when Lincoln got a shower, the glasses were unattended and he could get his hands on them.
The real sign however, was one evening when he screamed at a Sobeys reusable bag.
You see, Tyson does not like to see his schoolbag when he gets home from school. He goes to great lengths to hide in, if it is left out.
It is common for him to come running down the stairs, screaming, grab the schoolbag and shove it in the drawer. Same with the lunch bag and Lincoln’s schoolbag. I guess he realizes if Lincoln is going to school, so is he.
However, from the top of the stairs he was mistaking a reusable Sobeys bag for his schoolbag. He got to almost the bottom step before he realized exactly what it was.
So ….. once again, back to our amazing developmental paediatrician who listened to my concerns and referred us to the Janeway for a second opinion.
I have to stop right here and just tell you, how none of these things are easy.
I don’t want second opinions.
I don’t want to be on the list for new departments at the Janeway.
Going anywhere can be somewhat challenging but going to a place where Tyson is nervous and scared, is very, very difficult.
It starts with the waiting room.
We waited for about 30 minutes before being called in.
During this time, Tyson did watch YouTube but also ran around the room and tried to escape upward of ten times.
When it was finally our turn, the optometrist tried the visual acuity test again. As before, he got the larger letters correct and the smaller letters wrong. She went back to the bigger letters but then he got those wrong too.
She said the only way to be sure if there was a vision problem was to dilute his pupils. She asked if we had any upcoming surgeries as they could coordinate and do it then, which was a great suggestion but didn’t apply to us.
She obviously knew how difficult this might be and wondered if there was an easier route.
So we did the drops again. This time Mark wasn’t with me and I didn’t anticipate just how hard it would be to hold him still in order to get the drops in.
I’m not sure if you can appreciate how unpleasant this all is, by just reading it.
It is draining – physically and emotionally.
After it’s done, I feel like someone sucked the life out of me.
I also wonder what this is doing to Tyson.
And I know, our next visit will be just that much harder, as he will remember us holding him down to put the drops in his eyes.
So … drops are in and we are back to the waiting room to wait until they take effect.
After at least another 45 minutes, we were now ready to see the ophthalmologist.
I can’t say enough good things about the ophthalmologist Tyson saw. She was patient, persistent, and very thorough.
This part of the process took about an hour.
Not only does Tyson need glasses, but his prescription is significant and very close to Lincoln’s prescription.
And by the strength of the prescription, and the other signs that were present, I am guessing he has needed them for quite some time.
Then the reality of Tyson and glasses sinks in.
Will he wear them?
How many pairs will he break a year?
Are we even going to be able to find them on a daily basis? He has a tendency to flick and drop things. We are constantly looking for something. Constantly!
Once again, before taking him to pick out glasses, I do my homework.
I found out which vision centres parents have had good experiences with their autistic children.
I called one clinic and explained our situation. She suggested we come in for the first appointment of the morning and she didn’t book anyone else in during that time slot.
They were simply amazing.
One employee picked out a bunch of glasses and she gave us a separate room for Tyson to try them on. She let him use her computer as a distraction.
Another employee came in and suggested a pair of glasses that are flexible and suitable for kids who are a little rough.
They locked the front door so Tyson was safe and stationed another employee at the door, in case someone needed to come in.
The only thing they had left to do was check his pupillary distance.
Once again, the employee was wonderful. She said to me, “you know him best, I’ll follow your lead”.
Instead of measuring with the typical device, she said she could just mark on the lens itself. She demonstrated to Tyson how she was going to do this with another one of the staff members’ glasses.
Poor kiddo, he was so scared. He closed his eyes and his entire body was tense.
And now Tyson has glasses.
If you have managed to read all the way to the end of this post, I applaud you.
I think I might have gotten a little off topic from the original post but I have some much I want to share with you. (And I thought many people may be curious how you test a nonverbal child for glasses.)
Parents, if you think something is not right, be persistent.
Find a professional who will listen.
Because it’s not always autism.
6 thoughts on “When It’s Not Autism”
Amazing. I look forward to your blog. I honestly learn so much. You are amazing.
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Amanda, you have such a handsome boy there, and it fills my heart to know that he has such an amazing mom❤️
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You are an exceptional mom, he’s a lucky boy:)
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Such an amazing post. It takes me back to the time we had to get Kate’s hearing checked. The first time was absolute torture, the second wasn’t much better and the third attempt was basically “the best reading possible” without any red flags to suggest an issue. Draining, physically and emotionally, is absolutely how I feel after an appointment, especially now that only one parent can attend due to covid restrictions. I’m so happy that you were able to finally get the result that you knew was eventually coming and that you found someone who was so accommodating and knew they needed to follow your and Tyson’s lead. Autism is not always the cause. Our children may have Autism but it does not define who they are or is “always” the reason for an issue. As always, thanks for your additions to your blog. Very insightful and comforting to those of us who are a part of the world of Autism or for those who want more education regarding our amazing children.
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Thanks Suzanne for sharing your story and thanks for the kind words.
And totally agree, now that only one parent can accompany a child to an appointment it is just that much harder. Tyson had a specialist appointment this week after having a trip to emergency last week and it was quite a struggle to get him into the doors of the Janeway.
Amanda, it truly blows my mind of what you and other parents with children on the spectrum have to go through to get the simplest things done. All the research you have to do to find out who will really believe what you are telling them and stop brushing everything off as Autism related!!
Keep writing Amanda! You have really opened my eyes up to a world where government really needs to step up to the plate and help…not talk….literally do something for families like yours!
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