Severe autism often sends families scrambling for services in other states. But the truth is we desperately need quality adult autism programs within all state borders.
Sixth in our series about disparate treatment of severe autism.
By Sharon Drazner
My son Keith is 44 years old and has nonverbal autism. When he was younger and I explained to others that he had autism, people thought I said “artistic” and assumed he could paint, but this wasn’t the case. Instead of painting, we often dealt with behaviors and aggression. I can’t count the number of times people told me he should not be out in public if he couldn’t behave.
Keith attended Stratford School in Highland Park, Illinois, which is reserved for students whose IQ indicated they were never going to read. He was in the Special Autism Unit for boys where it was silent during lunch as no one was social enough to even look at anyone else. The Special Unit was isolated within a special school, and the students worked on compliance, survival skills and communication. The school was not innovative (Keith’s IEP was from a checklist) but he had terrific teachers who were wonderful. At age 12 he aged out of his disability program and we needed to file for due process to obtain a similar program.
We began to search for a residential placement when he was 12 and this lasted for five years without success. Some may wonder why we began when he was so young, but we were exhausted due to his lack of sleep, aggression, and frequent elopements. We were also concerned about the effects of his behaviors on his younger siblings.
There were no PUNS (Priority of Unmet Needs) lists, and no one helped us. We were only offered large institutional settings and began to look out of state in Wisconsin and Iowa and finally found placement in LaCrosse, Wisconsin. Keith was 17 years old and had to quit school because no school in Wisconsin would take him. His federal rights were violated and no advocacy group would help us. Hiring an attorney would mean jeopardizing his siblings’ college funds which we weren’t willing to do. Keith loved school and really missed it. He was in Wisconsin for 20 years and loved the people and his job when Bruce Rauner, the Illinois governor at the time, refused to authorize payment for out-of-state placements, and Keith was abruptly kicked out. Kicked out of a life he loved and which gave him a purpose for 20 years.
At 38 years old he was then placed in an emergency placement at a group home in Illinois with seven other men. At this point, I am aware of the staffing crisis and the disappointing budget, but wish someone would also care about what is best for the residents. I spend a lot of time trying to motivate people to simply do their jobs. Don’t get me wrong, I’m thankful that Keith has a place to live, but I do miss the situation we had in Wisconsin. The staffing was consistent there, they treated Keith like family, and communicated frequently about how he was doing. We once had staff at the new group home yell at us for calling too frequently after Keith was sick, and most of the time, there is one staff member for 8 people, even though smaller homes have a one to four ratio. It makes no sense to me.
These days, I enjoy our Sundays with Keith and notice that he is saying more words and trying to make us laugh. I could not have imagined enjoying his company so much when he was young and so impulsive. I just wish there were more options for people like him. My husband and I are not getting younger (we’re in our 70’s), and his care is too much for us with our own health concerns. Additionally, we didn’t want to wait until something tragic occurred and then we would need an emergency placement. We’d rather have some control over the situation while we’re still able to, and we realized that we couldn’t provide him with the consistency of care he will need for the rest of his life.
I worry about what will happen to him after we are gone, as it annoys me that autism has been co-opted by higher functioning people (no, articulate and high functioning people cannot explain what my son is thinking). By fueling this narrative we are doing great harm to those like Keith with severe autism who desperately need more options — in the borders of all of our states.
Sharon Drazner is the mom of three children; Keith, Eric and Kate and married to Fred for over 50 years. She is a retired French teacher, a passionate advocate for people with disabilities and an aspiring tap dancer. She lives in Highland Park, Illinois.
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