What is it Really Like to Live with Autism? A Nonverbal Woman Speaks Out

Q. We recently found out that our four-year-old granddaughter has autism, and will likely never speak. This is heartbreaking for us and her parents. With all the technology and therapies out there, there must be ways to teach her to communicate as she gets older. Do you have any insights about this or success stories that you know of? Also, how can we help plan for her future? Thanks for your help!

A. I’m reading a book about someone who sounds similar to your granddaughter. Carly Fleischmann was just two years old when she was diagnosed with severe autism, along with oral-motor apraxia, a condition that prevented her from speaking. Doctors told her family that she would never speak or develop intellectually beyond the abilities of a small child. She lived for years having her voice unknown to the world until she began to convey her thoughts through a computer at the age of 10.

Carly Expresses Herself through Her Computer

One afternoon, to the surprise of her therapists and her family, Carly typed out words on a computer, telling her therapists that her teeth hurt. It was the start of a new conversation between Carly and the world around her. This was surprising because Carly’s educators and parents never actively tried to teach her to read or write, so she somehow learned on her own.

Carly’s parents were skeptical at first, but soon it became obvious that their daughter was intelligent and had a voice that had been trapped inside her for years, despite the fact that Carly still struggles with all the symptoms of autism.

At one point, asked to type five words for a promised reward of a snack — a common motivational strategy for autistic children — she smiled and typed “five words.” Her therapists laughed. Carly then responded, “Just give me the bloody chips okay,” and was promptly given a snack. Her father says, “(a)s years of noisy silence died, a prima donna was born.”

In the years that followed, Carly kept on writing. At 17, Carly attended a public high school and enrolled in gifted classes.

Carly and Her Father Write a Book Together

Carly’s father, Arthur Fleischmann, said that every time he reads Carly’s writing, he learns something. “I find that when she writes it’s like a little bit of a gift because each time I see something that she writes, I learn a little bit more, I get a little bit more insight into my daughter,” he said.

Carly and her dad spent three years working on a book together about her life. The book, “Carly’s Voice: Breaking Through Autism,” goes into all of the ups and downs of Carly’s life. It blends their voices together, showing readers what it is like to live with autism and live with someone who has autism. “It was hard to relive some of the stories again but it teaches people the truth about autism,” Carly replied via her computer, when asked about what it was like to read her father’s words.

Her dad said the book was well received when it was published in 2012, and he hopes that it will continue to help other people have a better understanding of autism and its challenges. “I’m hoping it will be a powerful resource for people to get a glimpse inside what it’s like to live with autism and to have a greater level of empathy for not only the individual with autism, but the family and the dynamic around them, because it’s a very complicated, challenging world and it’s very easy to dismiss as an outsider,” Arthur said.

Carly’s Mother Describes How the Autism and the Book Put a Strain on Their Marriage

Mr. Fleischmann’s wife of almost 25 years, Tammy Starr, hasn’t been able to read the book. “The book is too painful to read,” she says.

Despite challenges in their relationship, Carly’s parents were very loving and committed to their daughter. They never gave up the fight to reach her. “We could see something in her eyes. Something was going on there. She had hours and hours of wildness, but she also had incredible moments of quiet,” Mr. Fleischmann says. “If she had been more placid, we might have backed off.”

“We have always had to worry about what does Carly’s life look like in the future,” Mr. Fleischmann says. “Our assumption is that she won’t ever be 100% independent. It’s a planning exercise … but I have gained some confidence that we have solved so many problems, we can solve that one too.” They have dreams for their daughter. Every day, Carly wakes up with the hope that she will be able to talk. “That’s my wish too,” her mother says.

Augmentative Communication Technology Gives Individuals with ASD a Voice

It is estimated that up to 50% of the over 2 million individuals on the autism spectrum are initially nonverbal or minimally verbal, similar to Carly, and need augmentative communication technology to meet daily communication needs.

One example of such technology is the SPEAKall! application, which functions as a smart device communication board and language learning platform that teaches students to associate words and images. In the application, students choose digital cards and move them to the speech bar, then the application reads the sequence aloud word by word. Hearing how the words sound can encourage the autistic learner to make an attempt at saying the word with his or her own voice. Users, caregivers, and clinicians can upload their own photos or images into the application and pair it with prerecorded or iPad-generated speech to personalize the program for each learner’s individual needs.

Other examples include:

The MegaBee Assisted Communication and Writing Tablet: The device is held by the listener who looks through the opening in the center of the device to view the direction of the user’s eye movements. A series of colored buttons allows the listener to push them as the user moves his or her eyes, first at one of six colored blocks, and then at a specific color (representing a letter) within that block. The goal is to spell out what the user wants to say onto the LCD screen.

Proloquo2Go: This works with the iPad and a separate AAC device isn’t necessary. Proloquo2Go provides text-to-speech voices, clear symbols, and a vocabulary of more than 7,000 items.

GOTALK 9+ is lightweight and durable and has a 45-message capacity, five recording levels, and a nine-minute recording time. The user simply presses the appropriate message key that corresponds with a picture.

Lightwriter SL40: This device is for those who are literate but unable to easily communicate through speech. The device is small, lightweight, and easy to transport, and the dual screen enables the user to type the message while the listener is sitting in a natural position for easy dialogue. It also includes a text-to-speech feature when communicating with others in the room. It also has a feature that allows users to send text message to friends and family. Additional features of the Lightwriter include a notebook feature, built-in buzzers to summon attention, alarms to remind the user of important events, and a built-in remote control for the television.

For more details about assistive technologies for communication, visit https://www.autismspeaks.org/worksheet/assistive-technology-communication-roadmap. Please see today’s Critter Corner for additional technology that can also assist those with ASD.

Special Needs Planning for Parents Is Essential

If something happened to you and you are taking care of a loved one with special needs, what would happen to that person? A special needs trust (SNT) is an essential tool to protect the financial future of an individual with special needs. Also known as “a supplemental needs trust,” this type of trust preserves eligibility for federal and state benefits by keeping assets out of the name of the person with special needs, while still allowing the trust funds to be used to benefit the person with special needs. Special Needs Trusts fall generally into these main categories:

  • Third-Party SNTs, where one person creates and funds for the benefit of someone else;
  • First-Party SNTs, which are created by or for the person with special needs using that person’s own money;
  • Pooled trusts are an alternative to setting up your own special needs trust if you can’t come up with a good choice for trustee or if you are only putting a small amount of money into the trust. There are both third-party and first-party pooled trusts.

Learn more about Special Needs Trusts here.

Guardianship and Conservatorship

People with autism, upon turning 18, often need a personal guardian and financial conservator. Read more about guardianship and conservatorship here, along with less restrictive alternatives such as a power of attorney and an advance medical directive.

Planning in Advance for Special Needs, Retirement Planning, and Estate Planning

When it comes to special needs planning, estate planning, and retirement planning, don’t wait until it’s too late. The attorneys at the Farr Law Firm can guide you through this process. Please contact us any time to make an appointment for a no-cost initial consultation:

Special Needs Attorney Fairfax: 703-691-1888
Special Needs Attorney Fredericksburg: 540-479-1435
Special Needs Attorney Rockville: 301-519-8041
Special Needs Attorney DC: 202-587-2797

Print Friendly, PDF & Email
About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.

Leave a comment

Thank you for your upload