The History of NextWork

The history of NextWork probably begins with the modern history of autism (about the last 30 years), and evolves as autism evolved in the late 90’s, when the number of diagnoses seemed to triple overnight. My daughter was diagnosed in 1997, when she was five years old. It took two years to get that diagnosis, and there were still people who had no idea what autism was. Prior to this diagnosis, I was told she was developmentally delayed–PDD-NOS. We tried diets and enzymes and fish oils and were on the cutting edge of Applied Behavior Analysis, because back then, everyone was looking for a cause and a cure. She screamed 80% of the time, so we tried Prozac, and she lost all emotion, so we took her off of Prozac because that 20% of intense happiness was worth struggling to figure out what she was trying to communicate through her screams. We went to parent support groups that were really just places to go and hear everyone complain about the same things we wanted to complain about. I always left crying out of sorrow or anger. Back then, some of the old thoughts about autism still lingered–the “refrigerator mother” was one of those thoughts. So, I worried that she had autism because I didn’t cuddle her enough or give her enough attention, even though she occupied so much of my time that my older daughter was really the neglected one. By the time she was diagnosed, I had a baby boy, and was certain he would have autism too since it was much more common in boys. I put him on a service wait list before he was one.

This is my daughter, Jessica. She drew the picture for this shirt. She is now 28 years old.

My daughter was a year or two older than all of the innovation. She missed early intervention programs that were autism-specific. She missed the elementary school program developed when she hit jr. high. I went back to college in my 40’s because I wanted to know what to do for my daughter, and knew I needed more than an occasional conversation with her pediatrician to get that knowledge.

Graduate school was all about assisting one of my mentors with a compilation of papers about autism and adulthood called Autism Spectrum Disorder in Mid and Later Life I learned more than I could quantify in the process of editing that book and writing two of the chapters. By the time I graduated and the book was published, I had already been introduced to Columbus Community Center, a full-service provider for adults with disabilities.

Decision makers at Columbus knew about my daughter’s generation, and they were already working to help. I was hired as a researcher with a focus on autism in Utah, and the task to learn about best practices in assessment and service provision.

That was six years ago. Now, that little program has grown into NextWork, a comprehensive program for adults with autism. I’m not working directly with my daughter, as her needs are different than the needs of my clients, but I know where to send her. I know the next steps. I also know that those first few years after my daughter’s diagnosis were scary because we were facing something unknown. I was confused and frightened and I didn’t know what I was doing. Worst of all, no one could really tell me anything that gave me lasting comfort. We needed time for that. Now, we can speak fluent “Jessica.” And in all honesty, her epilepsy is much more of a challenge than anything else in her life, for her and for everyone who loves her.

Most parents can’t go to a university to figure out how to support their children as they reach adulthood and are faced with all of the challenges and questions of independence. I used my education and experience and passion to play a small part in developing a place for those parents and those young adults to go. We don’t have all the answers, but we believe in collaboration. If I don’t have the answer, I know someone (or will find someone!) who will. NextWork is part of a beautiful community of autism supports in Utah, and we work specifically with autistic adults who want to thrive and break into the world independently. We focus on positivity, tenets of Cognitive Behavioral Therapy, social activities, supported living, and most of all, inclusive employment in the community This is the foundation of independence, and a vital missing piece for many of our clients.

Most importantly, we recognize the need for autists to self-advocate, and for parents to adjust from being an advocate for their child to being a supporter of a self-advocate. We have an autist on our staff. We collaborated with autists as we built the program and as we move forward and grow, and we have autists on our advisory board. We believe in “nothing about us without us.” (For a great resource for self-advocates, I like this website!

Contact us for a tour or even just to get some advice. We’re here to help because we know what it’s like to have these kinds of questions and be unsure of where to turn for answers. Turn to us. We’ll help you unlock your potential.


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