Interview With A Wonderful Nonverbal Autistic Adult

I had the opportunity to interview Jenna Lumbard by email. Jenna is 21 years old, autistic and nonverbal. As a mom on an autistic, nonverbal child, I was honored for this opportunity. Here are the questions and answers for the interview. It's short, but revealing. Thank you, Jenna.


1. Hi Jenna. Can you introduce yourself to my readers and tell us a little about yourself?

I would be happy to introduce myself to your readers. My name is Jenna Lumbard. I’m 21 years old and I live in Camas, Washington with my mom and dad. I have lived in Camas my whole life. I went to school here and I graduated from Camas High School in June of 2006. I enjoy watching videos and spending time in the water. I also like to surf the internet whenever possible.

I am nonverbal and I have autism, but that didn’t stop me from following my dreams of being a writer. I have written one book and have had it published. It is called “Worried Wendy Goes to School” and I have a second book in the process of being published right now and it should come out in June of this year. I have always enjoyed writing and I find I have an abundance of words and pictures in my head that I want to share with the world. I’m happy, funny and at peace with who I am.

I hope this has given you a little insight into who I am.



2. As a mom of an extremely intelligent, nonverbal child, I am always irritated (to put it nicely) by people that assume that a child that doesn't talk is intellectually low functioning. What I don't know, (because my son has difficulties expressing his feelings) is how it affects him. Did you face this growing up, and if so, how did it affect you?

I’m glad you asked this question, because that has always been a concern of mine. I have a wonderful friend and mentor that has been my aide for the last seventeen years and whenever I met someone that I didn’t know I always ask Janet to be sure that they knew that I was not retarded and I was not deaf. For some reason people always assumed that just because I couldn’t talk it meant that I also couldn’t hear so they would yell at me and then they would talk about me like I wasn’t in the room or they talked down to me like I was a small child. I found that to be very frustrating and demeaning. If I was able to talk to them for a while they learned very quickly that I was smart and able to communicate via my computer, but if I was not around my computer I was always irritated by their behavior. It’s important that people don’t make assumptions about someone’s intelligence by their appearance or by the label of a handicap placed on them by the medical community.

3. Do you have any advice for other non-verbal children and their parents that you wish someone had told you growing up or told your parents?

There is one thing that I think is of the utmost importance and a piece of advice that would have served me well growing up. The advice is, it’s okay to be autistic. You don’t have to strive to be something else or wait for a miracle cure to go on living your life. As I mentioned before I had a wonderful aide who always told me the only thing she expected of me was the best I had to offer. She didn’t care if I was autistic or not she expected me to always try my hardest and never give up just because I had some obstacles to overcome. My family is very supportive and they have loved me through a lot of challenges, but they never expected less from me just because I have autism. I love them for that.

Autism Advocate Reacts to New Autism Rates

“Earlier diagnosis, better screening, environmental contributors, vaccines…” There are many varied camps that offer an explanation of the rising statistics of autistic birth rates, but in truth while this is devastating to all, to a parent of a child already on the autism spectrum our fears are focused more on the day to day challenges that living with autism presents. Advocating for services, education, and treatment. Living with the day to day fears that present when you essentially feel as if you are entrusting a newborn to strangers on a daily basis. The fears that come when your child cannot read social cues and is therefore again at the mercy of society. The anxiety over wondering if your child will ever develop and sustain relationships independent of you. And finally the fear of what will become of your child should something happen to you. The growing statistics ultimately mean that the community of those facing this fear is growing exponentially. So, what does that mean to me a an individual?

My heart does ache when I hear the rising statistics because I was there…D-day…diagnosis day. And while that was over ten years ago it still evokes memories of overwhelming fear, despair, guilt, and pain. The fight for services in the school system and through insurance companies is work. The pain of watching his peers get older and build relationships and what will soon be romances as he remains perpetually my little boy often catches me so off guard that I have to put my head down to catch my breath. But through it all I am so thankful for him. My son has given me a view of life that I would not have seen before. Does his progress come in smaller increments, yes but each achievement is celebrated with as much fanfare as if they were by leaps and bounds. He has given me the gift of appreciation for every moment of the day. We have much work ahead of us, and unfortunately the knowledge that I am not alone in this struggle is not comforting.

To that end as I am not a clinician or expert I can only give suggestions from the point of view as a parent.

1. Don't give up, ever. It is not an option. Push your child as hard as you push your other children. Expect them to excell in school, home and their communities. Give them responsibilities and chores in the home, make homework manditory and demand it from their teachers whether it is academic in nature, tactile, or speech related. The process of having a routine to work from is important. In short, have expectations of them. How can they grow if there are no believes they can.

2. Work closely with their teachers, program directors, coaches, therapist, etc. Ask questions often and repeatedly, and be their voice until they are their own voice. Just because someone has a degree or license does not mean they are an expert in your child.

3. Dont beat yourself up if you cannot make every meeting, lobby for every piece of legislature, or advocate for every new service that comes down the pike...take care of you! This is a cross-country, not a relay...we are in this for the long haul and no one benefits if you are burnt out.

4. Stay educated, but follow your gut instinct. There is tons of conflicting information available thanks to the internet. Read it judiciously. Don't lose sight of your child, you know them best.

5. Expose them to social situations, people may be inpatient and sometimes mean, but raising your child in a bubble is detrimental to thier growth. Be vigilent for safety reasons of course, but dont isolate them. With the rates of autism being what they are more and more people are exposed to it. Social skill building by modeling is an important part of growth.

6. Above all rejoice in the accomplishments your child makes no matter how small. This builds self-esteem which they need.
To each family, newly diagnosed or living on the spectrum for some time now I offer my anthem of empowerment. No Small Victories…every accomplishment should be celebrated!

Jacqueline Williams-Hines is an autism awareness advocate and author of the No Small Victories autism awareness children’s book series.

What Happens When Autistic Children Become Adults

I conducted an email interview with Dan E. Burns, Ph.D., author of Saving Ben about the new autism rates. His son is currently 22 and is dealing with issues now that will only get worse when the rising number of children now being diagnosed with autism become adults. After you read this, I urge you to leave a comment about your concerns. We need to make our voices heard.

You can also join me, Stacie with Super Mommy to the Rescue and Jon Gilbert with Same Child, Different Day in our email campaign to the government. You can read more about our efforts here, Government Officials Need to Respond to Rising Autism Rates. A copy of the email we are using can be found on my post, Reaching Out to the Government to Help Our Children.

Here are the questions and answers for my interview with Dan E. Burns is author of Saving Ben:

Question: What was your reaction to the new CDC autism rates?

Answer: I was surprised that the CDC rate 1 in 110 was not higher. The commonly quoted prevalence rate from October 2009 issue of Pediatrics was 1 in 91, and anecdotal evidence suggests that both rates understate the problem. Dallas Independent School District (DISD) had three or four autism classrooms fifteen years ago, when Ben entered the system. DISD is planning to open ten new special education classrooms this year, mainly to serve ASD students. Big picture, we are looking at a 10-fold increase in ASD students in the last decade. Clearly, there is a growing wave of ASD students rolling toward graduation.

Question: These rates are based on children diagnosed with autism. How do you see this affecting children when they are adults?

Answer: When Ben was diagnosed, his pediatric neurologist said, "Save your money for his institutionalization when he turns 21." Ben is 22 and has aged out of the school system and related support services. He is at the lip of a tsunami of aged-out students who are about to hit the impact zone and will need jobs, homes, and supportive communities.

Question: Do you think the government will be prepared to assist such an increase in autistic adults in the future?

Answer: Governments are unprepared for the impact. As an example, last October, Ben interviewed with the Texas Department of Assistive and Rehabilitative Services in search of a job. He was informed by letter that "It has been determined that an employment outcome cannot be achieved because of the severity of your disability. Therefore, you are not eligible for vocational rehabilitative services." Without a job, Ben's opportunities to live in a group home are severely limited. And the supportive community that surrounded him at school has simply disappeared. Ben is left in the shore dump.

Question: 3. Do you think that the government is currently meeting the needs of autistic adults? If not, what will this mean for the rising number of autistic children when they are adults?

Answer: No, government is not currently meeting the needs of autistic adults. According to a CARD in Florida, "The Current State of Services for Adults with Autism," 74% of autistic adults want to work, but only 19% are currently working.

As usual, policies pressure for a solution must come through parents. Advancing Futures of Adults with Autism (AFAA) is holding national town hall meetings and is preparing a national agenda for presentation to Congress and President Obama. Meanwhile, there are some things that parents can do for children who have not yet aged out. Here are five things I wish I'd done before Ben graduated:

Institute a rigorous program of household chores and savings.

Consider a summer job instead of summer school.

Participate in weekend work retreats with your ASD child.

Work with the school system to create internships in sheltered workshops.

Resist school system dependency. Teach your child to advocate for himself.

Whether our children are school age or adults, we are in this together.

Dan E. Burns is author of Saving Ben: A Father's Story of Autism. See a 2-minute video review of the book, HERE.