As you know, autism is very much a part of our lives.
It’s been an immediate part of my life since Sweet B’s diagnosis. But prior to her diagnosis, I was mostly unaware as to what autism really is. If you had asked me what the early signs of autism were? I didn’t have a clue. Now it’s different but back then? I was clueless.
I had a vague idea.. mostly from watching Rain Man but beyond that? I was clueless. After her diagnosis, I gave myself a crash course and started to learn as much as I could.
And of course with the internet, now it’s easier to answer the question: What is Autism? And it’s also easier to find out what it is not.
But autism, at the beginning, was still very much a mystery to me.
Our story, of course, is just one of many. As many as 1 in every 68 children are diagnosed with Autism in the United States (CDC release, 2014). Autism affects more boys than it does girls and is considered to be a spectrum disorder.
What is autism?
According to the The American Psychiatric Association’s Diagnostic and Statistical Manual, Fifth Edition, there are specific diagnostic criteria.
That’s all well and good but what does it all mean?
I prefer this explanation from NIMH (National Institute For Mental Health)
- Persistent deficits in social communication and social interaction across multiple contexts;
- Restricted, repetitive patterns of behavior, interests, or activities;
- Symptoms must be present in the early developmental period (typically recognized in the first two years of life); and,
- Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
The term “spectrum” refers to the wide range of symptoms, skills, and levels of impairment or disability that children with ASD can have. Some children are mildly impaired by their symptoms, while others are severely disabled.
The latest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) no longer includes Asperger’s syndrome; the characteristics of Asperger’s syndrome are included within the broader category of ASD.
That one, I feel, is far easier to understand. Though when you’re dealing with the initial diagnosis, you probably feel like you’ve been hit by a freight train.
Want more help and advice? Grab my New Autism Diagnosis toolkit!
This is what autism meant to me:
Autism, for me, marked both the beginning and the end.
At first it was the end.
It was the end of my dreams, expectations, hopes, and wishes as I knew them for my oldest daughter. But, it was also the beginning of a new journey. One that I was completely unprepared for. Autism changed my daughter’s life, certainly, but it also changed mine.
Every day since then has presented a new learning experience and an opportunity to grow. This journey has transformed me from just being Sweet B’s mom to being her advocate and in part, her voice.
We’re continually experimenting with new strategies to increase her communication, ranging from homemade PECS to sign language. And we’re also refining the methods that we use to help her deal with her meltdowns.
This is What Autism Means to Me Now
Sweet B has come a long way since her initial diagnosis.
There are still difficult days and when I start to feel frustrated, I remind myself: if this is how I feel… Imagine how she must feel.
At least I can regulate my emotions and I can express what I’m feeling. She can’t.
And believe me- I’m far from perfect as a parent. There were days, and sometimes there still are days, that I just wanted to quit. But that wouldn’t benefit anyone in the long run. So as stressful as this has been, I remind myself of the good days and look for the positive.
If you’re thinking that autism has turned me into more of an optimist- you’d be wrong.
I was an optimist until her diagnosis. After it? Despite my turn towards being a pessimist, I finally realized what I was. I’m a realist. I have some optimistic tendencies but I’m always aware enough to realize that not everything is sunshine and rainbows.
And quite honestly, I wouldn’t want it to be.
I will never fully understand my daughter’s autism because I’m not autistic. All I can do is learn as much as I can to support her and be at my best to be a good parent to her.
So that is what autism has meant to us… what does autism mean to you?