Asperger’s & Autism – It’s Personal

Many, many parents have children with physical, emotional, mental and neurological differences and disabilities. Self-help certainly should include books like those I’ll be talking about in this post.

But first, a personal note:

I sometimes walk a very line here.

This is MY space and I can talk about anything I want. Obviously.

I am a shameless blabbermouth about my own life: My joys, sorrows and shames.

But when my life intersects with others, as it does regarding this subject, it feels downright scary.

You see, I know things. And stuff. About how it feels to grow up different. My different isn’t necessarily your different. But it might be.

In this case, it’s my son’s “different”.

My son admits that what he does affects me but doesn’t agree that I can talk about all of it. So, I’m careful, especially about his life today, as an almost-middle-aged man.

His struggles were never secret but they weren’t fodder, either. People knew. How could they NOT? Once – and I’ve mentioned this before on my blog – my son (aged 8) and I went to the local Christian bookstore to pick out a new book after he was sent home from school, mid-day. We’d had a trip to the paediatrician first and he was given the all-clear. From what? Well… He still had the remnants of his day at school, namely, bruising all around his neck. You see, he’d tried to hang himself. Our youth minister happened to be in the store at the time and noticed his neck. I gave him “the look” that said not to mention it… but he did.

That was awkward.

Of course, as a mother, my son and I share a connection. But he’s not blabby like me, nor does he care to read or even talk about the disabilities that keep him … well … in a way … shackled. He has some physical disabilities but isn’t a wheelchair user. Many of his problems are neurological and affect his speech and motor skills, as he wasn’t breathing when he was born.

He is able to do quite a lot. But not everything. It’s always been a question of…

Can he do this? That? The other thing?

I always told him he could do anything he put his mind to… but I fibbed. I didn’t mean to… I wanted to believe it, of course!

Autism & Asperger’s are not new diagnoses but back when my son was eight, they were! I still have copies of a letter I sent to our regional teaching hospital, begging for an appointment. I was working in a disabilities program at the community college level. There, I learned more than I ever thought possible about my son – and myself. Add to that some disability-awareness classes, seminars and trips to the library (it was pre-internet)… and I was my son’s best advocate! So, I knew who to reach out to… and I did. I asked for Asperger’s and autism testing for my kid who was an outcast at school, maligned on the bus, doped up on Ritalin (or he couldn’t go to school), molested by a family “friend,” and as you just read, suicidal. He desperately needed help!

In the end, the teaching hospital gave him a handful of diagnoses, none of them familiar or easy to pronounce. No autism, though.

But then…

When he was in his early-thirties… seven years after another botched suicide attempt… he was diagnosed with “significant autism”.

Really? I had no idea. <sarcasm mode off>

Looks like Mom was right in the first place. <<< Seething for the years of suffering my kid went through!

The point of this very long preamble is to show you how deeply I CARE about this subject.

So, before we get into the books, let’s get two definitions and a distinction out into the open:

1. Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication. (Link)
2. Asperger’s syndrome (AS) is one of a group of neurological disorders known as autism spectrum disorders (ASDs). AS is considered to be on the mild end of the spectrum. People with AS exhibit three primary symptoms: having difficulty with social interaction. engaging in repetitive behavior. (Link)
3. The principal difference between autism and what was once diagnosed as Asperger’s is that the latter features milder symptoms and an absence of language delays. Most children who were previously diagnosed with Asperger’s have good language skills but may have difficulty “fitting in” with their peers. (Link)

So, these three books are all different and spectacular! Let me make that very clear! If you love someone with autism or Asperger’s, may I suggest any and all?

• Parallel Play by Tim Page– I bought this book about ten years ago and read it cover-to-cover immediately! It’s a memoir of a man with undiagnosed Asperger’s. Well, undiagnosed until he was forty-freaking-five! Up ’til then, he was just an awkward, lonely, genius kid who grow up to write Pulitzer-winning music criticism. It’s a heartbreaking and sometimes hilarious journey. Thinking *maybe* my son would read it or allow me to read it to him (As if! He’ll read Harry Potter, LOTR or Monga but not much else! And listening to me read it? Not a chance! LOL) Anyway, I’ve kept it all these years because… a mother’s hope never dies? Plus, the kid on the front of the book has that same “What am I doing here?” look that my son had. I kinda fell in love with the little guy, you know?
• Children with High-Functioning Autism by Claire E. Hughes-Lynch, Ph.D.– This is the “textbook” of the bunch, for parent’s of children with High-Functioning Autism. It’s packed from beginning-to-end with advice, therapies, support networks and resources, along with Hughes-Lynch’s story. She is no slouch in the education department, either. From her bio: I am an Associate Professor of Special Education at the College of Coastal Georgia where I teach in an integrated Elementary/Special Education teacher preparation program. I have a doctorate in gifted education and special education from the College of William and Mary and was recently a Visiting Fellow at Oxford University, studying autism. Most importantly, I am the mother of two children, “Elizabeth”- who is 8 years old and after an awful lot of therapy, no longer qualifies for a label of Pervasive Developmental Delay-Not Otherwise Specified (PDD-NOS), and “Raymond”- who is 7 years old and has Generalized Anxiety Disorder- Not Otherwise Specified (GAD-NOS) and Tourette’s Syndrome. 
• Underestimated by JB Handley and Jamison Handley– Mom’s Pick alert, for those of you keeping track. It means Dr. Mom, the therapist suggests and gives her stamp of approval. I concur! (PS: I usually DO!)This is the story of Jamison Handley (Jamie) and his quest to communicate. From his bio: Jamison Handley is an eighteen-year-old nonspeaker who was diagnosed with autism when he was two years old. Thanks to a new communication method called Spelling to Communicate, Jamison is now able to fully communicate and switched from a “life skills” classroom to a regular academic classroom at his high school and will be graduating in 2022. He plans to attend college and study neuroscience. Jamison hopes to inspire others with his story and dedicate his life to advocating for the rights of all nonspeakers. It is a riveting story written from his father’s perspective (that’s JB Handley). And it’s heartbreaking, too. I resonated so deeply with the guilt his parents felt when they realized their son not only had things to say but understood everything that was going on around him. Seventeen years of silence was broken, and people ARE now listening, learning and using the program. It’s called S2C: Spelling to Communication. Jamie helped facilitate that! But…. All that came before. Ouch. If you’re interested to learn more, buy the book and read it, then hop on over to JB Handley’s Blog and also check out this interview of with JB and Jamie Handley on YouTube.

I’ve had many good books to help me with my son’s journey over the years. These three are the only books I have left. They will stay here in my collection because they’re just that good!

Seeing as this is one of my more long-winded posts, I am going to end now with something my son told me, years ago. He is verbal but has speech difficulties and trouble getting things out the way he means them. This may not be the exact wording but it’s pretty-darned close. He said: “It’s like I’m a computer. I have all the words in my head but the printer is broken.” I remember thinking I’d just heard a truth so simple, yet profound. I still feel that way.