S4 E1 Dealing with the Diagnosis (from Reluctance to Relief)
Let’s be honest, no one wants to hear anything is going on with their kid, whether it’s about autism or not. As parents, we often struggle with the stigma of a kid being labeled as one thing or another.
The reality is, we as parents need to be seeking answers. At the very least, we need to make sure we know what actions we really need to take to help our kids be the best they can be – autistic or not.
In this episode, I dive into the reluctance of obtaining a diagnosis… to the relief when one is obtained.
In today’s episode I’m going to dive into one of the most commonly asked questions: “should I get my kid diagnosed?”
This happens far more often than one thinks. After all, there is a stigma associated with any diagnosis – autism or not. So, as such, there is a reluctance in taking action.
So, let me share with you what pushed me into addressing this topic on the podcast…
In 2021 I fielded several phone calls and emails asking me to address various stages of being a parent of a kid on the spectrum. In this episode, I’m focusing on obtaining a diagnosis.
Often it’s either the mother or father who may state that something isn’t ‘exactly normal’ with their kid. Sometimes there is an apprehension in obtaining a diagnosis because things may seem ‘fine’ – when in fact there could be something going on.
My goal here is to encourage you to get your kid checked out by a trained professional, just to be sure.
Now, a bit of my own personal experience with this subject.
I’ve been a parent for nearly 19 years, and it just happens that my son is autistic.
Unlike some people who have reached out to me for all these years, we knew early on in his development that something wasn’t ‘normal’ in terms of his developmental track. The biggest sign for us was speech delay, but there were other signs as well in terms of his behavior.
Looking into all the bullet points of common signs in autistic individuals, you could just check off one after another. Because of this, it was pretty easy for us to acknowledge that a potential diagnosis of autism was highly probable. However, we needed the professionals to assess him to ensure we were able to get him into school, as well as have the services that he needed.
The challenge for us here is that both his mom and I were delayed in our speech when we were his age at the time, so it was assumed by his doctor that our son’s development was ‘normal’ for him, so his recommendation was for us to wait 6 months. He suggested we wait 6 months… twice.
Suffice it to say, during that year, we saw more and more challenges and knew we needed to obtain a diagnosis sooner, rather than later. This prompted my wife, with my mother-in-law, to take a day and travel 2 hours to Richmond, Virginia with our son to get tested. Back then it took more to get a diagnosis than it does today. Even after this trip, we still had to wait a period of time to get the final results of that assessment.
Then, we had to talk to the school system about this assessment, which then they took the results from the Richmond trip ‘under advisement’ while they did their own testing. (yeah, a lot of testing and assessing going on)
From the first signs of autism to the testing and final verdict, it was about 4 years to get a final diagnosis of PDD-NOS (which later we all just called it what it is: Autism).
Looking back over this time, the fight to get the professionals to actually provide that diagnosis may have actually delayed obtaining the help that could have helped him. What we sought was confirmation of our assumptions, and regularly hit roadblocks by the very professionals who we were seeking answers from. Times certainly have changed, for the most part.
However, this delay in diagnosis is something we regularly see creep up time and again over the course of a decade. From changing schools to homeschooling, and the list goes on. We’d notice as the year’s progressed, that kids who possessed the same traits as our son got diagnosed early… we’re about to get services earlier – and as such those kids were able to overcome certain challenges sooner.
That’s not to say our son hasn’t made a serious amount of progress over the years, he has, but he’s also had to overcome more than possibly he should have – due to the delay in getting him diagnosed.
Now we’ve been down this track for over 18 years and during this time I’ve had many moms and dads ask me ‘what should I do?’. This question comes up often when they suspect their kid is autistic. My answer? Get them tested, what harm could it do?
Getting your kid tested doesn’t mean you’re saying something is ‘wrong’ with your kid. It’s just getting to understand what is going on with your kid.
Years ago, for example, my own parents had a bit of a situation regarding something that was going on with me.
When I was in fourth grade, my teacher at the time was concerned about me. You see, I tended to wander off mentally in class. In short, I daydreamed a lot in her class. So much so she had a feeling I may have a form of epilepsy.
Taking this concern seriously, my mom took me to the hospital to get tested. It was an EKG test where wires were ‘glued’ to my head and they monitored my brain wave patterns as I slept.
Hey, to me it was a day off from school and to get a bite to eat after I took a nap. To my mom and dad, it was trying to find an answer to make sure they knew what was going on with me.
As it turns out, it was really nothing. Albeit a small spike in my brain waves, but that was considered not unusual for a kid my age – so nothing to really worry about.
Suffice it to say, I’ve recognized that there is a genuine fear in terms of obtaining a diagnosis. After all, what should I do IF my kid is labeled as autistic is a very common question. In my own parent’s case, what would’ve been the course of action if I was, in fact, epileptic. What medicines or therapies would I need? What do I do to make sure he’ll be ok?
So many more unanswered questions come about, and as such more worrying happens when we don’t know what’s going on… especially with someone we love.
Worrying is a form of fear, and like most things rooted in fear, it’s all about the unknown. Getting a diagnosis will help, and as such at the bare minimum it will provide the opportunity to set aside the question of ‘what is possibly going on’.
Seeking a diagnosis is the starting point in providing a sense of direction, and the beginning of bringing some peace of mind. Knowing what is going on, results in the potential of what next steps will be needed to take. Not knowing just adds more fear into the mix.
Over the past dozen or so years, I’ve had multiple conversations with moms and dads who are reluctant at getting a diagnosis. Usually, it is the mom that starts with the concern, with the dad (or other members of the family) not accepting or being reluctant at obtaining a diagnosis, often expressing that ‘nothing is wrong’ and ‘they’re ok’ or ‘they’re fine’.
Now, I’m going to speak directly here to those friends and family members who aren’t the mom or dad here…. accept the truth that there are valid concerns by the parents, and they are seeking answers. They are closer to their child than you are, and as such are making sure their kid has all the support they can get as they get older. Obtaining a diagnosis doesn’t mean anything is ‘wrong’ with their kid, it just means they need to know what’s going on so they can eventually get the services their kid needs so they can be the best individual they can be.
For the Dad’s… be the dad you are destined to be, and seek confirmation of whatever is going on so you can take the appropriate action. Your kid needs your help and support, autistic or not. Getting a formal assessment in this area will help provide a path for you and your family to go, regardless of the result.
As a married man of over 25 years, I’ve learned one inherent truth regarding baby momma’s… they know more than we do when it comes to their kids. The bond between a mother and their son/daughter is incredibly strong, so much so that even scientists have difficulty explaining it. As such, their ability to ‘sound an alarm’ should always serve as a warning that something needs to be looked into further. So, if she says your kiddo may be autistic, just go ahead and get your kid-tested. She needs your support on this… regardless of the result. Your job as the Dad and more importantly as her significant other is to support her, so man up and do it (yeah, I went there).
Remember this: If there is a diagnosis of autism (or any other diagnosis), this doesn’t change the fact that your kid is still who they are – an amazing human being. What it does mean, however, is you and your kid’s momma will have the ability to obtain the necessary resources to get the services you need sooner. Remember, it took us 4 years to fight for a diagnosis on our end, and we’re still behind in helping our son in specific areas. I’m sharing this with you to encourage you that the sooner you get the diagnosis, the less of a fight it will be down the road… IF the diagnosis is indeed autism and such services may be needed.
However, IF it is determined that nothing is going on with your kiddo… then no harm, no foul. Either way, you have a great kid – and you’ll at least have a sense of relief in knowing what actions – if any – you will need to take.
I hope this episode encourages you in your efforts to help your kid, wherever they are at on the spectrum… or not.
Stay tuned next week, where I aim not to get in trouble with my own wife as I pass along some marriage tips when taking care of a special needs child.
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Cory, Darryl, Linda, and John
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