autism · Down syndrome

What is Autism and Why Does It Matter to You?

Today is World Autism Day. There are specific activities involved, such as wearing blue, but beyond that, why should you, the average internet surfer, give two hoots about autism awareness and acceptance? Why would it matter to you?

The diagnostic criteria for Autism Spectrum Disorder (ASD) specify that to be diagnosed a person has to have social deficits. Added to this are the criteria regarding sensory processing and rigidity of behavior.

In plain English, what this means that approximately 1 in 68 people have significant social deficits and sensory processing difficulties to be considered Autistic. The disorder occurs on a spectrum from mild to moderate to severe.

Because it’s a spectrum of presentations, you might see one person with Autism who is highly intelligent with more social challenges and rigid behavior and another who doesn’t speak at all, has limited to no social skills and constant sensory avoiding or stimulating activities (or a combination of avoiding and stimulating), and both of them are considered Autistic.

No two people with Autism are alike. When you know a person who is on the Autism Spectrum, you might think you have a pretty good idea of what Autism is, but really, you only understand that person. The next person you meet with Autism might have very some different personality traits, behaviors and social skills.

My son, Ben lines up his cars all the time, lining items up is a common Autistic behavior.

This is where awareness and acceptance come into play:

  • If someone says they have Autism, believe them. Just because they aren’t like someone else you know with Autism doesn’t mean that they don’t actually have it. To get an Autism diagnosis, a person goes through clearly defined standardized testing conducted by a qualified clinician, and chances are that you are not qualified to decide if the assessment was correct.
  • Be aware, when you’re in public that you might encounter an Autistic person. If someone you meet seems to have unusual social conduct, give them the benefit of the doubt and accept them as is.
  • Autism meltdowns are very real and very challenging. Don’t judge the person melting down or the people with them, just give them space and a smile.
  • Keep advice to yourself. Sure, your cousin’s neighbor has Autism and a gluten free diet helped them and your coworker calms his Autistic son with essential oils, but those are two different people, and what works for them isn’t a magic fix for all things Autism related. Most people with Autism and their families have accrued great resources and have tried many things, so chances are good that your suggestion isn’t new to them.
  • They might be using medications, natural remedies, or therapies to manage their Autism, and whatever they’re doing is between them and the professionals they trust to give them direction, it’s not for you to judge their approach.
  • Just like anyone, Autistic people (and their families) want to be accepted. If you want to be helpful, read up on Autism and be a safe and accepting person. It’s really the best way to help. The Autism Society is a great place to start if you want more information.
  • As a parent of a child with Autism, I have been both chastised and blessed by strangers in public, but mostly just ignored. Honestly, being ignored is probably the easiest for us, so don’t feel like you have to help someone who is struggling in public in order to be an accepting ally.

What is really helpful, is knowing that my son is accepted, just as he is. And anyone can do that.

autism · Down syndrome · Uncategorized

Our Own Drummer 

You know time crawls on when you’re waiting for your song to start so dance alone to the beat of your heart.

~Fall Out Boy, Phoenix

Autism spectrum disorders are known to occur in individuals with Down, and statistics show that ASD is more common in Down syndrome than the general population. It’s hard to nail down, but a reasonable estimate, per the NDSS, of the incidence is 5-7% of the Down syndrome population having co-occurring ASD.  I would estimate that number to be on the low side.

Of those people with co-occurring disorders there’s a pretty clear description of the common presentation, which includes, but isn’t limited to; frequent stimming, little interest in social interaction, and often the individual is nonverbal.

Suffice it to say, after reading about Down syndrome and ASD, I didn’t have any indication that Ben had autism in addition to Down syndrome. In fact, you could have knocked me out with a feather when we got his diagnosis.  I got the book, “When Down Syndrome and Autism Intersect“, which further confused the matter by describing the standard presentation of DS/ASD, which was nothing like Ben.

Ben with his cars

 

It took me quite awhile to wrap my mind around the ASD diagnosis. In fact, it was at last year’s local Down Syndrome Association picnic that the reality hit home like a sledge hammer. Ben was disregulated and riding the meltdown train the whole time, and the difference between him and the rest of the people with Down syndrome at the gathering could not have been more obvious.

Ben is very social, in fact excessively so. What he lacks is reciprocity.  He’s far more characteristic of what used to be considered a PDD-NOS diagnosis.

Alas, Ben is an island. He doesn’t fit in the general Down syndrome community, nor does he fit in the DS/ASD community.

I certainly don’t know what it’s like parenting other children with co-occurring Down syndrome and ASD, but I do know that it’s awfully lonely parenting our little man. The resources are not designed for us, they don’t address our challenges.  Ben is who he is, and I love him in all of his quirky individuality, but man would I love to find a kiddo with a similar presentation. I could just imagine sitting down to coffee with his or her parents and comparing stories, watching their eyes light up as we all realize what we have in common.  We bypass the standard Down syndrome, ASD, and DS-ASD resources, because none of them address our situation.

For now we do alright on our own. Ben has his own drummer, and he sure is cute marching to the beat on his own.