“My tummy hurts,” Declan says holding his belly and rolling on the floor.
“Declan, it’s 2 AM! Please try to go back to sleep,” I say groggily way too many mornings.
“I wish you would eat more than 5 things! It isn’t healthy to only eat chicken nuggets and pizza!”
These are all things you hear in this house.
Often, Declan has an upset stomach.
And although we try to get Declan to sleep through the night with supplements and a lot of vigorous activity, he still is unable to do so.
And Catelyn and Declan would rather starve than eat something that smelled offensive, had an odd texture or was completely unknown.
Autism: A Whole-Body Disorder
And not just for my family. These issues are common among all individuals on the spectrum.
Along with the above-mentioned concerns of sleep disturbance, gastrointestinal distress and food related issues, it is common for individuals on the spectrum to also be diagnosed with epilepsy, ADHD, anxiety, depression, schizophrenia or bipolar disorder.
So today, when I received a letter from Autism Speaks addressing these co-morbid issues, I was super happy to see the following statement:
The last decade has brought tremendous advances in understanding and addressing the many physical and mental health conditions that frequently accompany autism. We now know that autism is a whole-body disorder for many people on the spectrum.
Awesome! If there are common roots in these areas for people on the spectrum, how do they all relate?
Inside the letter was a link to an in-depth report:
This report can be found here.
I went right to the areas that affected our family.
I read about sleep first and found:
These studies consistently found that over half of children with autism – and possibly as many as four in five – have one or more chronic sleep problems. (Cortesi 2010, Krakowiak 2008) These problems include difficulty falling asleep, frequent and prolonged wakening during the night and extremely early rising. Sleep issues in those who have autism go hand in hand with daytime behavioral challenges, including spikes in repetitive behaviors, communication difficulties, hyperactivity, irritability, aggression and inattention.
I read further about how caregivers were affected. Being awake when their children were awake and in fear of their children waking in the middle of the night and wandering.
I could easily relate! We have alarms placed on all our doors and, with the Pediatrician’s blessing, Declan was locked in his room at bedtime for over 3 years – just to keep him safe from early waking and wandering.
I then read about the feeding issues related to autism and learned:
The term feeding disorder describes problems with eating enough or the right type of food. Among children with autism, this often involves eating only a few types of foods, eating only certain textures or colors of food, and/or disruptive mealtime behavior. These issues have many causes, including sensory aversions, anxiety (e.g. after an incidence of choking, gagging or vomiting) and rigidity (aversion to change).
Yep! Yep! Yep!
I found similar positive information when I read about Gastrointestinal Disturbances for people on the spectrum. I also found sporadic relief from diet control, and more relief from adding probiotics to Declan’s diet (when I can get them past him!).
In short, I found the information about Autism and Health to be very informative. I encourage you to take a look.
I found the information provided to help treat some of these co-morbid disorders to be very interesting. And I am happy to see that this report will be put out annually, so the information will be updated as new developments arise.
Declan’s lack of sleep can affect his following day. I watch Declan get angry, lash out and cry more on days he did not sleep well. I watch Declan moan and hold his belly. As a mom, I would like those issues to find a cure so that he is not experiencing any unnecessary pain. So I am glad to see the research being completed.
Inside the report I also found this updated handout about autism. I found it to be very informative!
All very interesting, I’m amazed with the numbers , They seem to be acknowledging and researching more now. 😉
I agree – I was really happy to see all the information they collected, but was also surprised at the numbers! And happy they are researching more now 🙂
It’s about time 😊
I agree 🙂 🙂
It’s funny that so many autistic kiddos seem to have the same food list😃
The sleep is the biggest hurdle. Ben’s meds make sure he sleeps better so he’s better able to do school/life during the day.
These kiddos have enough just with noise, lights, textures etc… It would be nice if they weren’t tired and didn’t have upset tummies too.
Haha! You are right! Chicken nuggets, morning, noon and night. Pizza if we order it and there is some left over 🙂 We give Declan a hefty dose of Melatonin (he’s worked his way up through the years) and it seems to work most nights now. Things are WAY better than they were – but still – no rhyme or reason there are many days he still gets up in the middle of the night and is ready for the day. I hope they can figure out what the link is to make those parts stop. Because you are right – these guys have enough going on. They do not need to have to work through those issues too!
My daughter is exhausted all the time through lack of sleep. Also Isobelle would eat plain pasta for every meal. Hours to eat other foods.
I am glad they are starting to recognize autism as a whole body disorder. If they can figure out the mind body connection, maybe they can help eliminate these things.
I pray they do
At least you found a great teacher for your little boy on how to swim! Again it stated that drowning is a HIGH cause of death for autistic people.
I agree – so thankful!!
I never thought about it be a whole body issue, but it is so true. My oldest has ADHD and anxiety. He also is beyond picky, and smells and textures still bother him at age 18. He often has trouble going to sleep. Since he’s been older, he takes melatonin to help him fall to sleep faster. He swears by it. He has also been on a probiotics since before birth (I take them, too). They are lifesavers. Great and informative post!
Thank you!
I wish I had read this two years ago. It’s so revealing. Our son struggles with sleep and this can have a significant effect on his mood and concentration spans. He also gets tummy problems and acid reflux during periods of high anxiety.
This was so revealing to me – there are times I go back and reference again as time goes on. Glad you found it!