Updated: May 21
Interview with Tanta Powe, Champaign, Illinois Resident.
By Tanya Parker, Founder of Unity in Action Magazine
I can only speak about my experiences, I don’t know if it is the same everywhere, but I am struggling to get proper care and supportive services for my autistic daughter, especially now that she is an adult.
I am here as a witness to say, as far as public healthcare, there are not any of these resources or services available to help autistic adults and families. If they are here in the community, please help me find it. For example, the states mental health crisis for services. The process is so slow, and support for the families is often not there.
My daughter’s health, weight, and sleeping patterns are all factors that affect her well-being. They don’t have doctors that are training to deal with autistic patients. Autism is different from mental retardation. You cannot treat them as the same.
Since she has grown out of the age for a pediatrician, she was told that they don’t have another doctor to refer her to that is qualified to work with non-verbal, autistic adults with her spectrum. For example, she is almost 20 and now needs reproductive support, and we can’t find a doctor. She has seizures, I feel that they could, but don’t do enough testing to try to identify specifically what is causing the seizures, they just want to pump her with medicines. What about brainwave testing? She deserves a high level of healthcare, the same as anybody else.
With a lack of services, where does this leave the family?
We have almost lost it all emotionally, mentally, and financially; especially during COVID-19. The lack of services leaves the entire family at critical levels of stress because you don’t have the information, training, supportive service, or financial means to help your loved one. They need to provide counseling for everyone in the family to help them understand how to be supportive and develop coping skills. If we had help for our family members, it would help everyone in the family. The emotional crisis turns into a health and wellness crisis, which leads to a financial crisis.
When she was a child as young as 4, they told me something was wrong with her, but they didn't know what was wrong with her. She was not properly diagnosed for years. Later when she was 12, I begged for her to get in a course offered at the university for autistic youth, but they would not let her take it because she is non-verbal. I pleaded with them knowing that she really needed the course. I explained that though she is non-verbal, she understands what you are saying and she desperately needed the help from the course. If they would have allowed her to simply participate back then, some of the issues we are facing now may have been avoided.
Where is the money going? If they are giving millions of dollars for mental health and COVID-19, but no one is investing this money in support for autistic persons and families.
Why can’t they provide a free trip to a special hospital for families that can’t afford it? A doctor told us to go have some fun, but we don’t have any money to go anywhere. Where are we going to go, to the park? That is not fun for many autistic people.
Solutions offered by Tanta Powe:
1) Doctors in all specialties trained to properly treat autistic patients.
2) Community events that are designed solely for autistic people, especially adults. For example, a social gathering that allows them to be in a safe place with an environment that has taken special considerations for the needs of autistic persons, like lighting and sound options.
3) Provide counseling and resources for everyone in the family to help them be more supportive of their autistic family member.
Publisher’s Thought: "I would like to see Tanta Powe Co-Lead on a new program, which she is paid as a Community Partner with an organization. Her experience and passion can lead to more support for families and autistic people in our community." Tanya Parker, Founder of Unity in Action Magazine.