My son, Ethan, is a gift. His autism is not. We’ve always seen him as a blessing to our family. We love, cherish, and accept him for who he is. His accomplishments are celebrated no matter how large or how small. While I am proud to be Ethan’s Dad, I do not accept autism, and I certainly do not celebrate it.
Let Me Clarify
When I say I do not accept autism, that doesn’t mean I don’t accept that my son has autism. Of course, Ethan has autism, and it’s likely he always will. I accept that. What I mean is that I reject that premise that there is nothing we can do about it.
Most “professionals”, (doctors, therapists, teachers…etc) will tell you that all their symptoms, behaviors, and even medical issues are simply part of autism. I cannot tell you how many times parents have heard some form of this statement from autism professionals:
“Oh, that’s just part of autism. There’s nothing you can do. It will always be like that”.
It’s this presumption that I reject. I accept my son may have challenges due to his autism for the rest of his life, but I do not accept that I cannot help him overcome them.
How Do I Accept Autism
I accept the things that autism brings as part of my life. They are my current reality. These things make my life more challenging, and I don’t necessarily like them. However, I recognize that right now, in this moment, they are part of my everyday life.
Our family has willingly made concessions to adapt to Ethan’s needs. Things we don’t want to be destroyed must be safely hidden or locked away. Laptops, phones, and other important electronics can never be left out, and we teach Ethan’s little brother to lock his bedroom door.
We Do Not Blame Him
If we forget, we risk a glass of water being dumped on our laptop, our new iPhone being tossed down the stairs, or an epic Lego build being destroyed. Sometimes, things we can’t put away still get broken. We are on our 4th TV this year, and we’ve had other electronics like the wifi router and our Roku ruined as well.
These things happen. While they are incredibly upsetting, we don’t blame Ethan, and we certainly do not judge him harshly for it. “It’s autism’s fault.” In this way, we accept autism.
Do I Accept Autism?
Rage, Self-Injury, Anxiety, & OCD
I accept that I am not able to have nice things in my house right now. You won’t find many photos, pictures, or decorative items on our walls. What you will find are holes in the walls, stains on the carpets, and all sorts of randomness thrown about.
This is our normal and we accept that. We don’t accept the sudden rage that makes him put his foot through the walls or the self-injurious behavior that causes him to put his head through his bedroom door.
I’m okay with patching holes on a regular basis, but I am not okay with my son hurting himself. He doesn’t always bite his arms, kick holes in the wall, or bang his head on the floor. This behavior comes and goes. Sometimes, it’s months before we see it again. This tells me that there is some underlying trigger that sparks this behavior, and it’s not just his autism to blame.
Do I Accept Autism?
Sudden Crippling Anxiety
It’s okay that most of our walls are bare. I’m fine with that. However, I am not fine with the anxiety that sparks out of nowhere. This angst causes him to obsessively need a clock off the wall, all lights turned off, or clothing removed.
He’s never needed the lights off before. The clock was there for years, and I’ve been wearing this hoodie around him for months. Why are these things suddenly causing him panic and uneasiness? If this were simply autism, wouldn’t it always be like this?
I’m fine with changing my clothes and turning off the lights to put him at ease. But, I want to learn what caused him to compulsively need these things out of blue. What underlying condition triggered that anxiety & OCD-like behaviors?
Nighttime presents its own reality. Many kids, autism or not, suddenly get a burst of energy right at bedtime. They like to make a game of it running and giggling about the house saying their not tired. But with kids on the spectrum, it’s amplified 10 times.
My son will start uncontrollably giggling, jumping, and yelling right around bedtime. What makes him different from neurotypical kids is he doesn’t appear to be in control of this behavior. Something seems to be driving that, and usually it’s the bowels.
For our son, the nighttime hyperactivity are his signs of constipation. Whenever, he gets like this we have to check on him constantly because his struggles often lead to accidents in his room.
I accept this as my reality. I accept that I may have to replace my Rug Doctor every year or so because it’s been burnt out by these repeated “code browns”. Again, this is okay. We don’t judge him for this, but we are not okay with the GI issues that are behind it.
It’s not okay that he has to struggle. It’s not okay that sometimes the only way he can go to the bathroom is by squatting or laying down in a particular position. I do not accept that constipation is part of autism despite what his pediatrician told us years ago.
In fact, we have already disproved this. His GI symptoms have improved dramatically over the years thanks to dietary changes and other medical interventions.
Sleep is another area we have been able to improve even though most believe it to be perfectly normal for ASD kids. As many as 80% of children with autism have difficulties with sleep. This is one area where the experts are coming around and beginning to see that there may be things we can do to help. However, they don’t offer much guidance aside from telling parents to check for sleep disorders and prescribing melatonin or other pharmaceutical sleep aids.
Sadly, a lot of parents simply accept their sleep troubles and just hope for the best every night. I have made my peace with certain aspects too. 5 am may just be my son’s permanent wake up time. I accept that, and I accept he may have trouble falling asleep some nights.
There’s a Reason They Wake Up
However, I did not accept the repeated 2am wake up calls. My son used to wake up every night, and be out of his mind hyper. Giggling, spinning, jumping on his bed…etc just out of it. This is not normal, and my wife and I knew there had to be a reason. For us, it was a yeast infection called Candida. After treating that and tweaking his diet, those 2am crazy wake ups are history.
My son is 11, which means his peers are in 6th grade. Unfortunately, academically, Ethan is closer to a kindergarten grade level. He cannot read, write, add, subtract, or even correctly identify shapes consistently. Again, this is okay. I accept this without judgement.
At the same time, I am hopeful that he will one day be able to catch up to his peers. If we can figure out what causes the anxiety, the OCD, the self-injurious behaviors…etc then perhaps we could help clear his mind enough to help him learn better and improve his cognitive functioning.
Heal the gut, Heal the brain
We’ve already improved his sleep, but if we can also heal his GI issues, then perhaps we can regain a healthy gut-brain connection. The gut has many important jobs to do in addition to digestion.
It influences hormones, and is where the bulk of the immune system resides. Furthermore, most neurotransmitters are produced by the gut, so if we can heal his gut, then we should be able to restore or at least improve the nervous system and with it his ability to communicate and learn.
I do believe he knows far more than we realize. We will continue to heal the underlying conditions and remove the blockages that prevent him from showing us just what he understands.I look forward to the day that he will be able to express himself better and show off all the knowledge he has in his mind.
Do I Accept Autism?
Accepting my son and accepting that he has autism does not mean that I am blind to the real medical issues he faces. Acceptance doesn’t mean complacency, and I reject that all his challenges can be chalked up to “just autism”.
Our family embraces and loves Ethan and accepts him as he is. At the same time, we work hard to help heal his body, which in turn helps him function better. It’s not about trying to change him, or cure autism. For us, it is about making him feel better and live a happy, healthy, and fulfilling life. No matter what that may look like.