This is a blog by Marianne Sullivan, Managing Director, Regional Programs and Services in the West at Autism Speaks. Marianne is the mother of a 21-year-old adult with autism. She spoke on a panel at the 2nd Annual National Conference this past weekend in Columbus.
It has always been important for people to share stories with one another to help the people around us grow wiser and stronger. I want to share with you some of my personal experiences with my son, Hunter, who is now a 21-year-old adult with autism. If you are in the process of “trying to figure things out” with your son or daughter, my heart is with you. I hope sharing my story will open up some new ways of thinking about your circumstances and possibly lead to a more positive outcome. In any case, we do know that the more we share with one another, the more we will benefit.
Let me begin by saying that while my story has had many successes, we have also had our challenges and I will share both with you. Hunter was first diagnosed with autism when he was only two years old. During those early years, his language development was extremely limited and unfortunately, this has continued throughout his life. He was unable to express his needs and feelings so frequently that he felt deeply frustrated. The frustration, in turn, was expressed by aggressive behaviors.
We decided to face our challenges with Hunter by becoming part of a team and founded a school in our area dedicated to serving kids with autism. Hunter adapted quickly at the school but even with high quality interventions, he struggled to overcome his behavioral challenges during these school years with limited successes.
Recently, I came across a school report from four years ago. I would like to share an excerpt from it:
“His parents reported they have a difficult time de-escalating situations at home when they set limits on Hunter’s access to food or when he is denied his specific requests. Hunter’s continued escalation of challenging behaviors resulted in his termination of services at school and district is recommending residential services.”
This was our turning point (or breaking point); we decided we had to focus on a few very important goals and develop key supports for Hunter. Reassessing our priorities and getting organized seemed to be just what we needed to get on the path to success. Everything we did came back to four key areas and eventually, we started to see progress. Focusing on these key areas may also help you:
Have a safe and supportive place to live.
When Hunter turned 19, with the help of Supportive Living Services provided by the California Regional Center, he was able to move to a new home in our community. The agency assisted us in locating and moving into his new home. He was now moving toward independence.
Maintain access to needed services.
We were fortunate to participate in the creation of an education center for young adults affected by autism. Hunter quickly adjusted to this new level of involvement. His support team created an educational program that focused on improving his ability to participate in various aspects of community life, while at the same time setting goals to improve the quality of his daily living activities like meal planning and household chores.
Participate in meaningful activities.
His team continued to work on skills that would allow him to be more independent, such as money management, grocery shopping and home maintenance. It became very clear to us that his new independence was very meaningful and important to him. It motivated him to understand new levels of what it meant to be reasonable and accepting of a variety of circumstances. He wanted to be able to make his own decisions and have some control over his life and we supported each and every step in that direction. Engaging in leisure activities helped him in community life; he was able to walk downtown to movies and is now bowling in a bowling league with other adults.
Develop friendships and relationships in a community that involves and values the input of the individual with complex communication needs.
We contacted local businesses in the community and asked them to partner with us on jobs for young people like Hunter. We were delighted a local brewery offered him an internship. With staff support, Hunter found a job. The Santa Cruz Brewery treated him like one of their own, giving him real work and real compensation from the beginning. He quickly adjusted and showed that he could be responsible and productive labeling bottles and boxes for the brewery’s manufacturing department. He also prepares pallets that are now sold at Costco. Imagine how proud he is when he sees his product in Costco! Like anyone with a job, Hunter has the occasional bad day at work, which means that his coworkers have seen him at his most difficult. With support from Hunter's job staff, the company has learned ways to be supportive and as a result, they have been able to maintain their commitment to him as an employee. Hunter's self-esteem has grown as a result of his job.
If you asked me just a few years if I thought Hunter would have a part-time job, live on his own with support and enjoy his community, I would have replied, “NO WAY.” While Hunter has made a number of big gains, we know there are challenges ahead. As most families know, a child's movement toward independence is not done in a day, a month or sometimes even in a year or more. Accepting this, while also keeping a focus on your day-to-day goals, is vital to your success.
I hope you remember that being a loving, supportive parent of a child with challenging behaviors, as well as his or her advocate, is a lifelong pursuit. We all go through periods of feeling overwhelmed. Trust me, you are not alone. Connect with others who share your situation and it will help! Also, remind yourself that pacing is important, so don't hesitate to take breaks when you need them. Your health and well-being are necessities! Rest brings us the relief we need and when you fill restored, and you will, you will be able to do what's needed. Stay strong!!
For more information about the transition process with your child or young adult with autism, check out the Autism Speaks Transition Tool Kit. Visit the Adult Services page of our website for more resources for adults on the spectrum.