My immediate survival mode kicks in when my 39 year old son Trent, stands in front of me looking deep into my eyes, wanting a “a big hug,’ then asking me what his day will look like. This is his life now, much different than before, but he is in a transition. Transition does not only happen when moving out of school services, it can happen anytime in life. Nobody talks about middle aged or older adults who rely on supports for transition. It is time to add to the autism dialogue, autism and adulthood of all ages.
Trent was diagnosed in 1980 at 3 years old with classic autism. During the school years, he was placed in self contained classrooms with speech therapy. His high school years went well, he sang in the choir, which he loved and was selected for a new innovative employment program and had two paying jobs in high school.
Trent is verbal but has communication and social challenges. He has difficulty in explaining details of an event, describing how he feels when he is ill, conversing with others, or explaining his emotions. Yet, he is improving in all of these ways. He relies upon people supports to access the community and to live in his own home.
Do not let people tell you there isn’t growth after 21, there undoubtedly can be cognitive and emotional adaptations throughout life. But to qualify this, there must be exposure to the community and opportunity to have experiences that allows for self emotional growth.
From the time Trent left high school, we assisted him in creating a life he has enjoyed: painting on his canvases and living in his own home with support. Trent relies upon someone who understands his needs, his challenges, and offers positive options at home and in the community to relax and enjoy life. The people in his life provide this understanding and acceptance. He led the way, we listened and followed.
Of the 21 years of his adult life, Trent worked at Meijer, a retail and merchandise store, part time for 11 years. He was a team member, worked along side coworkers, appreciated by his employer and the shoppers who got to know him. When we first negotiated the job for Trent, we devised a unique innovative arrangement whereby Jason, Trent’s live-in at the time, was hired along with Trent. They were a team working together. Yet, Jason’s role and support faded when Trent began working more independently. One day when I was shopping at Meijer, I over heard the manager bragging about Trent to his corporate manager, “Yes Trent is a legacy here, what would we do without him?” His comment took my breath away.
For most of Trent’s adult life, he has lived with contentment and support among friends and family. Of the past 16 years, I feel blessed he had only two live-in support persons, Jason for 13 years, and Rachel for 2 years.
But things change.
Just a few months ago, Trent moved back home with his step dad and me. His live-in support became ill and had to leave to take care of herself. Yet miracles happen. One month ago, we were blessed to find Hannah, Trent’s new daily support and friend. Her parents were artists we knew well for 16 years.
Hannah is 23 years young, upbeat, fun, adorable, and a recent graduate from University of Louisville. She and Trent run around town experiencing: painting in his art studio, exercising at two different gyms, participating in shopping twice a week for his personal items and groceries, hanging out in his own home watching TV, or eating out in restaurants. Trent is getting his life back because Hannah has opened up his world.
Because of Trent’s desire to live in his own home, my brother, Trent’s uncle has stepped forward and agreed to move into Trent’s house to live with Trent. They have a unique relationship and Trent will feel safe with Craig. Trent is quite independent in managing self care and doing household chores with minimal assistance in his home, yet he relies on someone to supervise, provide engagement, and plan activities and access to the community.
Nothing just happens. I offer 5 actions I believe in so deeply.
Embrace the uncertain future. Don’t let fear hold you back in creating the daily life for your autistic son or daughter. I have to be honest. I struggle with this, but keep moving regardless of fear and undertainty.
Notice the individual’s strengths, even the smallest.
.
Find every way you can to lead the individual to develop their best strengths and interests.
Find support people who understand and will follow through. Create opportunities where they can experience everyday community settings and ways to use and develop their strengths.
Create work and career opportunities that meet their enjoyment and capability.
I worked diligently and implemented the suggestions I am offering you.
When all supports are provided, Trent’s life transformed into:
-joy in creating oversized abstract paintings with brilliant color, using his strength in visual spatial ability.
–exposure and connectedness to the art community, exhibiting his art in fine art shows and galleries nationally (the prestigious NYC Agora Gallery and Naples FL., Sweet Art Gallery). To see Trent painting: https://www.youtube.com/watch?v=8rtbbyw6K6Y
–contentment to follow a daily routine, (enhances his connections, communication, and flexibility).
–comfort and delight living in his own home, (he is known as a neighbor and community member).
–happiness when he knows what he can look forward to, (he lives for activities he enjoys and things he finds important, such as, his Golden Retriever, Katie).
–feeling and expressing love and receiving sense of belonging when he is around close family members. (he feels emotionally and deeply connected).
–feeling physically well because of medical holistic supplements.
Trent has discovered his interests and strengths despite autism challenges. He has practiced daily self awareness, meeting challenging situations, interacting with others with supports. Trent has adapted and lived in this complex world because of emotions and feelings of acceptance because of the individualized supports in place. People tell me he is an example to the community how a person with autism can live his life and offer his artistic talents among the best artists.
Yet, like all parents who have an adult son or daughter with autism, I am vulnerable to the day I will no longer be able to oversee his support needs. I don’t really know what to do about it. I have completed all the legal actions I know at this time. But I can’t be guaranteed of anything.
When autistic children become adults, and autistic adults become older, each family is left to figure out solutions on their own. This can be overwhelming when crises arise. Persons with autism rely on all of us to: live physically and psychologically safe, connected to others, have meaningful daily activities, and access to good health care. This is true autism acceptance in action.
On behalf of this vulnerable group, we must be active in pursuing policymakers, business leaders, and community leaders to work collaboratively to form interdependent supportive care on every level that meets the unique needs of every adult with autism.
There has never been more of an urgent time to answer the Call to Action on behalf of this group, adults with autism. Try these:
- If you have a son or daughter with autism, take small steps to help your adult have exposure and opportunity to community settings.
- Speak out on public forums and advocate for all adults with autism.
- If you are a therapist or teacher, reach them through their strengths.
- If you are a policy maker, listen to parents and advocates for persons with autism. Start new initiatives that include and enhance the well -being of individuals with autism.
We must be accountable as a nation. Why? Because individuals with autism are vulnerable and rely upon us now for their safety, happiness, and well-being. Many years from now, we will be judged as a society on how we cared for our most vulnerable human beings on earth, individuals with autism.
For now, I will do my best to help him continue to live the life he owns and have a life of his own. My most heartfelt wish is that every adult with autism have the chance to live a life they can own, because they are worth it.
END NOTE:
I believe I have something unique to bring to the table, a strengths model to support personal preferences and emotional needs, the Capability Approach (CA). Within the CA, I designed the Marquette Strengths and Career Index, a self assessment tool to receive career options that closely match the individual’s identified strengths in hard skill interests, self expression (multiple intelligences), personal preferences, and emotional strengths.
I listened to the voices of hundreds individuals with autism and their advocate/parents about how they found meaning and how they wanted to live their lives. Over three decades of study, my own research, private practice as a consultant through Office of Vocational Rehabilitation, I designed personalized vocational action plans for clients to get a job, pursue college, and/or to live independently. Additionally, I have a 39 year old son with autism who is an accomplished artist. I used these strategies to help him create work and a life he enjoyed with meaning and purpose. We personally experienced many trials and errors with set backs and progress.
My mission is to help people with autism to live their adult lives. The goal is to enable their hopes and desires by creating work and career options that interconnect all their strengths areas: cognitive, self expression, personal preferences, and emotions.
This is critical because many adults with autism are invisible within our culture. I believe we can revolutionize our culture to include adults with autism and equally important, receive the benefits of their best strengths that our world needs.
Please offer your comments, because I want to hear them. I spend a lot of time writing. If you like my blog and think it can help other people, please share it.
Thank you for reading blog.
Dr. Jackie Marquette
www.marquettestrengthsindex.com
Discount Code: Index50
to receive daily posts and live chats to to: https://www.facebook.com/MarquetteStrengthIndex/