Tag: autism-spectrum-disorder

  • The Value of Lived Experience

    The Value of Lived Experience

    Autism clinicians bring essential expertise. But lived experience brings something more: context. Without that context, even the best professionals can miss what families really need.

  • Cam’s Journey to Independence

    Cam’s Journey to Independence

    Some readers may not even know I have a son, and that’s on me. I tend to write more about my daughter, Brielle. In truth, Cam has always seemed like the “easy” one, while Brielle’s journey has been more challenging.

  • Letting Go While Holding On

    Letting Go While Holding On

    Adjusting to life without Brielle at home has been a profound journey. Despite the emotional turmoil, I find solace in knowing she is thriving in her group home, embraced by caring staff. Yet, the haunting stories of neglect fuel our worries, reminding us of our vigilant love and advocacy.

  • Ode to Jelly

    Ode to Jelly

    Am I OK? How do I answer that? Right now I feel like I will never be OK. My 23-year-old daughter is moving into a group home in days, and I’m not OK. Externally, I guess I’m OK. I woke up today, I didn’t cry. I got stuff done. I just packed another suitcase full…

  • The Challenges of Autism: A Mama’s Perspective

    The Challenges of Autism: A Mama’s Perspective

    I wish we could cure autism. I understand that some people may not believe autism needs to be cured, and I respect that. Autism is a wide spectrum, and I know it well. There are many incredible people in the world with a type of autism that makes them unique, talented, special, and amazing. My…

  • NJ’s Disability Watchdog Is Leaving Unfinished Business

    NJ’s Disability Watchdog Is Leaving Unfinished Business

    After seven years as New Jersey’s government advocate for individuals with developmental disabilities, Paul Aronsohn is still struck by the indifference. Year after year, Aronsohn brings attention to heartbreaking stories of disabled individuals abused in group homes and neglected on buses; families desperate to keep their violent children with severe autism from hitting them and…

  • Raising Twins with Autism: A Family’s Journey

    Raising Twins with Autism: A Family’s Journey

    When Mary gave birth to identical twin sons on Christmas Eve in 1988, she felt like she had won the lottery. But within two years, she knew her boys were not developing like others their age. Robert and James didn’t seem to notice if Mary was upset, nor did they miss her when she wasn’t…

  • Her Home

    Her Home

    We visited her future group home this week. I wanted to hate it. No such luck. It was everything I could have wanted for my daughter, if I ever dreamed of her moving out. I don’t know that I did. But if I did, I would have wanted a big beautiful home in light colors…

  • Life in Transition

    Life in Transition

    I drive with my left hand on the wheel and my right on my daughter in the back seat. My husband scolds me for it. He can pound sand. Brielle usually just humors me by holding my hand loosely for maybe a minute if I’m lucky. In recent weeks, she’s been holding on longer. Just…

  • April Rains

    April Rains

    Autism consumes us, so much so that when non-autism trauma happens in our lives, it throws us. It pushes us to the very edge of our sanity. I haven’t written in a while, but I knew April was coming. I pledged I would write every day in April, as I have done in the past.…

  • The Ties That Bind

    The Ties That Bind

    I had my ex-husband and his wife over the other night for wine, beer and charcuterie. This doesn’t happen often. In fact, it was the first time. But it was needed and healing. And a bit unreal. Our anxious adult son, who was working at the time, kept texting my ex to ask if everything…

  • Where It Began

    Where It Began

    I’m trying to write more. It’s been too long. I’ve had a lot of new followers and made a lot of new friends over the years. So I’m going to reintroduce myself. My name is Stacie, I am a lifelong New Jersey girl. I have been a journalist for more than 30 years. I’ve mostly…

  • A Never-Ending Anxiety Attack

    A Never-Ending Anxiety Attack

    Acknowledging my inevitable mortality was the first step. Planning for her life after my life is no easy task. We are on a waiting list for residential care. I want that care to be in place before I die.