The Hardest Part of Navigating Life with An ASD Child


What is the hardest part of navigating life with an ASD child?

The hardest part of navigating life with an ASD child is bearing witness to the constant struggle and discomfort with life.

A Confusing Vacuum

No, managing an inquisitive, often very bright, and seemingly out of control toddler or child is not the most difficult challenge parents of kids with ASD face. When my kids were very young, I thought it was the hardest thing ever. I could follow my two boys through the house and not be able to pick it up as fast as they could destroy it. They seemed in constant motion, and no toy or household item was used as intended. The toilet was for standing in, the toy truck was for throwing, and the flour in the kitchen was for creating a dust storm of epic proportions. You get the idea…you may have even lived it! (Click here to read about how Autism Needs a Witness Protection Program!)

Managing 2 small children with undiagnosed ASD was an incredibly frustrating time in life for me, I thought I would lose it on a daily basis. But the real gut-wrenching challenge came later in the form of a complete lack of good information and available resources to be found when I did finally get an indicator from the doctor that we might be dealing with autism. We step into a new territory – a confusing vacuum of quality information that parents have to decipher on their own the minute they suspect their child might have “Autism”.

That’s one scary word!

And one that can be tough to confirm, understand and address once it appears in the picture.

No matter how long we wait on the waiting list, or how many places we seek solutions, some of us don’t even get a crystal-clear diagnosis! Instead, we get vagaries, assumptions, request for more testing and often a list of conditions that read like alphabet soup (which might signal a diagnostician not secure with rendering an ASD diagnosis).

“I just absolutely could not tolerate watching my son suffer, be unhappy and struggle with life on every channel.”

Wow! Can you imaging what it would be like if your medical doctor gave you a diagnosis of 5 different ailments related to your stomach pain because he didn’t really know for sure and there was no way to test for sure?

Absurd, right?

But that’s exactly what I hear from parents all the time – they get some form of a diagnosis such as ASD with ADHD, ODD, Anxiety, and OCD. Oh man! Good luck trying to figure that tangle out!

Although the lack of quality diagnosticians is improving, many families still face years long waiting lists, only to be given uncertain and often even incorrect diagnoses.

That was my experience, too.

I was probably more impatient than many moms. I just absolutely could not tolerate watching my son suffer, be unhappy and struggle with life on every channel. It hurt me every day. The frustration was outrageous. Trying medication after medication, therapist after therapist and not seeing any real results. I remember when my frustration was so consuming that I envisioned myself climbing over the desk of the Diagnosing Psychiatrist, grabbing him by the necktie and demanding that he refer me to someone who knew two [email protected]*s about this problem my child was facing. (I managed my impulse well enough that I FINALLY got a recommendation without any profanity or physical harm being done in the Psychiatrists office).

The Green Growing Edge

As hard as getting a diagnosis is, once you have it, confronting the autism by keeping your child on the green growing edge is the biggest challenge we’ll face. Once you have a diagnosis, the real work begins.

In an attempt to manage their discomfort, kids with ASD often try to control their environment, and reduce their exposure to new experiences. They are experts in sameness.

As a parent, we have to say “no” sometimes, even when we know we will trigger a painful meltdown. We have to push our child’s experience to expand it, inspire of our desire to relieve their pain. this is black-belt parenting. It requires strength, stamina and determination and grit! So steady on. (Click here to read about Walking the Parenting Tightrope of ASD.)

The diagnosis marked the beginning of my journey of learning to understand the nature and subtleties of ASD. Since then I have interviewed thousands of parents one on one, and heard their stories. I have attended the conferences, read books, and talked endlessly to experts on the subject of autism. All in pursuit of helping my own child live his best life (which thankfully he is now doing!).

I have spent nearly two decades reading, studying, writing books, and developing training for people like me who find it intolerable to sit by and watch our children suffer.

“There are real solutions, and they are not as hard as you think.”

There are real solutions, and they are not as hard as you think! With the right understanding and support our kiddos with ASD can grow up and live full and rewarding lives they love.

No parent should have to go it alone, feel like a loser, or become so helpless and desperate that they are ready to physically threaten the diagnostician to find real solutions. (Click here to read about our Training for Parents.)

Thank you for taking time to understand more, but knowing isn’t enough! Let us help you take the next simple step toward implementing your knowledge for your relief or the relief of others.

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