By Mary Rosswurm
I remember when my son was diagnosed in 1994 like it was yesterday. At the time, though, the prevalence rate was 1 in 10,000 births. Here we are, two decades later, and the diagnosis rate is 1 in 68. Autism has changed the face of childhood worldwide and, I guess, parenthood as well. Little did I know that we were on the front edge of an epidemic.
As I look back over the last 20 years, I can categorize my journey into seven distinct “stages of autism”:
Alarm – That came right after the diagnosis. I was in a panic. It was a crisis for our family.
Anguish – I remember feeling that my world, as I knew it, was over and that I would never feel happiness again. I wondered if I had done something to cause his autism. This was by far the worst of the stages for me. My mom really helped me through this.
Anger – Then I just was mad. Why did this happen to my beautiful little boy? What did we do to deserve this? I remember reading an article in Rolling Stone magazine and Courtney Love was talking about the drugs she did while she was pregnant. I didn’t even take Tylenol when I had a headache! This did not seem fair!
Action – This stage was about pulling myself up by my bootstraps and finding out all I could about autism and treatments. Unfortunately, there was no autism welcome wagon that was going to pull up into my driveway!
Acceptance – This crept in slowly, but I began to realize that autism was the hand that life had dealt me, and that I was going to have to make things happen for my son. It was up to me.
Advocacy – I learned that the squeaky wheel got the oil! I had to be on top of everything! Soon there were other autism parents like me – and I saw that when a lot of autism parents got together, things started to happen!
Admiration – I am truly amazed each day at what our kids with autism can do. I know that for many of them, getting up each day and facing a room full of people is so difficult, yet they do it day in and day out. I am blown away by what the parents of children with autism have done – they have moved mountains!
Right now, my moments of alarm, anguish and anger are few and far between, but they happen. If you are an autism parent and are struggling with alarm, anguish and/or anger, please reach out to somebody! You are not in this alone – we are here for each other and for all our children living with autism. It’s a journey, but thankfully, one that we are not on alone.
Mary Rosswurm is executive director of Little Star Center, Indiana’s first ABA facility.