I so dislike like this name. How gloomy and doomy can one word be? Why did we choose such dreadful words to label issues faced by people who are already facing so much?
(Speaking of names, don’t even get me started on Oppositional Defiant Disorder (ODD). Who thought it would be okay to label people odd? (I will give my thoughts on this one another day as it’s too much to pass on altogether.))
Autism often times don’t occur alone. It comes with a “friend,” or sometimes more than one “friend.” That is comorbidity – a primary disorder with co-occurring diseases or disorders. Because one is not enough, right? (Here is an article I found describing why identification matters. I love her focus on treatment.)
It’s Not a Jigsaw Puzzle Piece…
Autism is not a simple jigsaw puzzle, and it’s not a puzzle piece. It is rather, a tremendously complex phenomena with overlapping parts and pieces of other issues of equal complexity, some of which are currently impossible to separate out and definitively label all wrapped up in a person who is supposed to manage it internally in a way that allows successful external interactions.
I won’t even try to simplify that sentence because I like that it symbolically represents autism.
I make this statement so that you can see that whatever you feel when trying to understand all this stuff is valid. All emotions allowed. Because this stuff is hard.
Talking about autism as a stand-alone disorder is misleading at best. It is true that there are people who have autism and only autism. There are so many more for whom an autism diagnosis is a starting place.
In many families with autism there are other people dealing with other disorders. It can be a tough, tough situation!
…It Is a Much More Complex Puzzle Worth Solving
I won’t discuss the fairness of it. I will say that, for us, life got easier once we accepted that there were primary AND secondary issues. THEN we were able to understand what makes us tick. Life became easier, and we started breathing again.
Before that point, we had been holding our breath. We were always waiting to see what would happen on any given day! Some of our issues were as “simple” as extreme food sensitivity – I so miss eating chocolate! (See my post, “Autism, Chocolate and a Fire-Breathing Dragon.”) Yet, once we knew, we made changes. We made meaningful, life-altering changes.
If you were getting the impression from my posts that all is quiet and simple with autism in my home, think again! We are a crazy, wacky bunch. We know it, we own it, and most importantly, we are well on our way to managing it! YES! It can be done.
Shifting from A Peaceful Life…
When the kids were little, life at our house was so very quiet! The girls were never in trouble, they played quietly and were a great help around the house.
Of my four daughters, the first three were all born before the oldest one turned three. They tied their shoes together, learned to ride bikes on the same day, and all hit puberty at about the same time.
Things weren’t perfect. We had a buffet of issues:
- Speech delays
- Learning difficulties
- Low muscle tone
- Sensory issues,
- Medical issues (recurring pneumonia and RSV)
- Food and airborne allergies
Yet, somehow it all seemed manageable.
In hindsight, things were probably too quiet. That no one was looking for autism in girls at the time no doubt caused delays that could have been avoided.
…To a New Reality
Can I say that once puberty hit all heck broke loose?
Let me say that again, ALL! HECK! BROKE! LOOSE!
Gone were the days of sitting and playing. Peace and simplicity? Not! Unquestioned obedience? Can I have that back please??
I have no idea why people dread the “terrible” two’s” It’s sooo much easier to help a two year-old than a teenager. (Sigh, the good old days!)
Complicating this, we are a family of few men and boys. For generations on both sides of our family there are many only sons and lots of daughters. I choose to raise my girls to be competent and independent, not knowing what was coming down the road. What was I thinking???? Too late to rethink that now! (I really wouldn’t if I could, but GOODNESS!)
It felt like my oldest three girls all came unglued at once. The fourth one began struggling a few years later. For more on our journey through puberty, see my post, “Autism and Puberty: Get Your Daughter Ready!” or join the FREE Resource Library to get my free eBook, Autism and Periods: Because She’s Gonna Have ‘Em. Period.
One issue at a time, we began to realize how tedious the process of unraveling the mysteries of the mind could be. At the time, we had no idea that we would end up where we are today which was a good thing.
We didn’t have one common issue.
Nor did we all have the same issue.
Comorbidity is not simple, nor is it straightforward.
Enter Autism and Its “Friends”
Our issues are so intertwined, it has taken a great deal of time and effort to sort out. Some of us have autism, some of us don’t. One of us with autism has comorbid issues. The other does not yet have any comorbid disorders diagnosed.
So what do we have at our house?
- ADD/ADHD (comorbid with autism in one kiddo and present in two who do not have autism)
- Anxiety (comorbid with autism)
- Depression (comorbid with autism)
- Bipolar Disorder Type 2 (in a kiddo who is not autistic – but autism had to be ruled out)
- Panic Disorder (in a kiddo who is not autistic; a more specific form of anxiety; autism was ruled out)
- Food Allergies/Intolerances (in both kiddos who have and do not have autism)
- Sleep Issues (in both kiddos who have and do not have autism)
- Sensory Processing Disorder (not officially diagnosed – we have had difficulty finding a diagnostician)
- Trichotillomania (in a kiddo who is not autistic)
- Dermatillomania (in a kiddo who is not autistic)
- MTHFR genetic mutation (in two kiddos who are not autistic)
- An undiagnosable bleeding disorder (in a kiddo who is not autistic)
- Migranes (in a kiddo who is not autistic)
That is some of what we have. Some of our diagnoses are short-term so I’m not listing those.
Success is Measured by Your Attitude and Effort, Not Your Diagnosis
It has taken us years to get here. Years. Unraveling this many issues is a marathon, not a sprint. It is also a moving target. Diagnoses were made, changed, and adjusted.
Feeling like we can now return to living? SO VERY WORTH IT!
Don’t get the wrong impression here. We continued moving forward while seeking answers, solutions and treatments.
The girls graduate from high school early or on time, have held or holds a job, volunteers(ed) in our community, etc.
There have been bumps in the road, days we were less than productive, even failures and restarts. Yes, failures and restarts. Lots of them. And that’s okay.
Core concepts we have employed to get to this point?
- Our stated goal as individuals and as a family on any given day is simple, “What is the best you/we can do today?”
- All out honesty and transparency are required. Hiding things has consequences:
- Missed diagnoses
- Wrong treatments
- Delays in improvement
- Damage to relationships
- No judgment allowed. (This standard is tough to apply, takes much effort, and we have to hold each other accountable to it. I can tell you that, for us, to get along and be happy, judgment has to be absent! We do goof and have to try again , but the point is we do recognize the need and try!)
- Failure is allowed as long as it is the result of effort.
There Are Rewards
We are kinder, more compassionate people because of the journey we were forced to embark upon. We are closer to each other.
Autism and comorbid issues are not stopping us.
Would we choose this? No.
Will we face it, overcome it and thrive even with it? YES.
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