As I’m sure you are aware of, Autism can be very challenging, for both the person touched by it and their family.
But what happens when the person affected by Autism has other health/mental health problems as well?
This is commonly known as a comorbidity.
In the case of the Lost and Tired family, our 3 boys with Autism have other health/mental health issues. Some of these additional challenges are minor in nature, while others are deemed much more serious and tend to interfere with everyday life.
Some of these issues facing the Lost and Tired family are, ADHD, OCD, PICA, Primary Immunodeficiency, PFAPA (a rare fever disorder), Schizoaffective disorder, asthma, anxiety, PTSD and an as of yet, undiagnosed degenerative neurological disorder.
I say the Lost and Tired family is facing these issues as apposed to an individual child because we face these issues as a family and the family as a whole is affected. Does that make sense?
Ironically, one of the most serious health problems, Primary Immunodeficiency, seems to be the least challenging. At this point in time, Gavin simply gets a monthly infusion of donor antibodies to replace or bolster his defective immune system. It’s been a total blessing that he has never had any major or life threatening complications as a result of this disorder,.especially he went 11 years without being diagnosed.
Emmett on the other hand, suffers from a rare fever disorder called, PFAPA. While this isn’t a life threatening condition like Primary Immunodeficiency can be, it interferes with everyday life.
Emmett had surgery last year to help with this condition.
The benefits of the surgery are debatable as he still sufferers for the same condition. However, instead of running a fever of 104°F for 10 days every 3 weeks, he runs a fever of about 100°F almost constantly. Also since the surgery, the cold sores in his mouth that form during a flare up have gotten much, much worse.
Because he’s always bordering a fever, school, therapy and everything is a challenge. We never know when he’s actually sick or just experiencing a flare up. Attendance is a huge problem.
When your Autistic child struggles with things like PICA, you likely face many trips to the emergency room for ingestion of non-food items.
I’ve lost track of the number of trips to the ER we have made for PICA related reasons. The reason we choose to go to the ER is because we can’t rely on Gavin to give us accurate information about what he might have ingested. We have to error on the side of caution and make sure there was nothing toxic or otherwise dangerous in his system.
When your dealing with other, serious mental health issues like, Schizoaffective disorder, Autism can be significantly complicated and here’s why.
When your child suffered from a condition like Schizoaffective disorder, the line between reality and imagination is extremely blurred, if not all together missing. Gavin, when not properly medicated, will experience both audio and visual hallucinations.
They are very disturbing to Gavin and the rest of the family. He sees things are aren’t there, and he has conversations with people that only he can see. During the very worst times we have experienced with Schizoaffective disorder, Gavin would see what he called a “rat face”, climbing on the walls and attacking both him and his little brother’s.
Gavin would try to protect his little brother’s from things that weren’t really there and accidentally injure them. This was one of the most heartbreaking things I have ever experienced.
It’s often times very difficult to tell the difference between an active imagination and hallucinations. This is one of the biggest reasons for limiting his excitement and stimulation. Things like birthday parties and Christmas will send him into a tailspin, further blurring the lines between reality and imagination.
Can you imagine what it must be like for a very sensory sensitive child to have to contend with his two main senses playing tricks on him, as Gavin will say.
All of these things make Autism a real challenge for the Lost and Tired family. Autism can be a challenge to begin with but when you are dealing with comorbidities, the lines between individual disorders becomes so blurred that it becomes next to impossible to know what is what.
Many parents and families are dealing with comorbidities, on top of the Autism. Common comorbidities include things like ADHD and Bipolar disorder. Those are the most common things I heard about from other special needs parents.
My heart goes out to all the families and persons touched by Autism, but especially those dealing with comorbidities. Please know that you aren’t alone……
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