In honor of Autism Awareness Month, I wanted to give a voice to the moms who care for and love children with Autism. When we think about children with special needs, often times we don’t consider the perspective of the mother. In today’s blog, I’d like you to hear from Marie Devoe, a mom on the front lines of Autism Awareness and advocacy.
Nola Bougie: What is autism?
Maria: Autism spectrum disorder (ASD) is a neurodevelopmental disorder that impacts the nervous system and is defined by persistent deficits in social communication and social interaction, accompanied by restricted, repetitive patterns of behavior, interests, or activities. One in every 68 children in the U.S. are diagnosed with autism and typically affects boys in higher numbers than girls. The symptoms can be very mild – almost undetectable or extremely severe. No two people with autism are the same or have the same symptoms. Each of them has their own set of strengths and challenges.
It affects the entire family. The average cost of care is well over $60,000 per year, per child. Most health insurance plans do not cover autism therapy and treatment so parents have to pay out of pocket. Which makes it really hard for those of us in the vanishing middle class and even harder on low-income families. It’s not fair that treatment is not accessible for ALL children regardless of the socio-economical demographic.
Nola Bougie: How old was your child when he/she was diagnosed?
Maria: My daughter was diagnosed on April 23, 2012, she was 2 years old and I was 9 months pregnant with her little brother, who was born 13 days later. He was also diagnosed with a milder form of autism when he was 18 months old.
Nola Bougie: Do you prefer child with autism or autistic?
Maria: I prefer them to be called by their names 🙂 I try really hard for them to not have to live by a label. But when describing their condition, I’ve used both autism and autistic.
Nola Bougie: How does your child communicate with you?
Maria: My son has great communication skills and speaks very well. My daughter is considered nonverbal however she can communicate using single words and short phrases.
Nola Bougie: What activities does your child enjoy?
Maria: My daughter loves to dance! She’s into ballet, dolls, and likes to play basketball and kickball. My son likes soccer, PowerRangers, Transformers, trains and anything that has to do with space and planets.
Nola Bougie: Does your child attend a specialized school?
Maria: They both attend public school but are in an autism classroom.
Nola Bougie: What has made the biggest difference for your child?
Maria: Early intervention. There is no quote-unquote cure for autism. It is treatable through intensive speech, occupational, and behavior therapy.
Nola Bougie: How can I explain autism to other kids?
Maria: Good question. First, it depends on the age and maturity level of the child you are explaining it to. One good way to try to explain that their friends or family members with autism are just like them! They are kids who want to play, learn and make friends but they have a hard time understanding how the actual process of doing those things work. They need good, kind friends that will help them. There are also a lot of resources available to help in this discussion. Organizations like Autism Speaks have short films, brochures and a wealth of information about autism that can help explain it to anyone. Here is a link – https://www.autismspeaks.org/family-services/resource-library
Nola Bougie: Are there any signs that one should look for?
Maria: Yes, there are some signs to look for but a diagnosis must come from a doctor.
Possible signs of autism in babies and toddlers:
- By 6 months, no social smiles or other warm, joyful expressions directed at people
- By 6 months, limited or no eye contact
- By 9 months, no sharing of vocal sounds, smiles or other nonverbal communication
- By 12 months, no babbling
- By 12 months, no use of gestures to communicate (e.g. pointing, reaching, waving etc.)
- By 12 months, no response to name when called
- By 16 months, no words
- By 24 months, no meaningful, two-word phrases
- Any loss of any previously acquired speech, babbling or social skills
Possible signs of autism at any age:
- Avoids eye contact and prefers to be alone
- Struggles with understanding other people’s feelings
- Remains nonverbal or has delayed language development
- Repeats words or phrases over and over (echolalia)
- Gets upset by minor changes in routine or surroundings
- Has highly restricted interests
- Performs repetitive behaviors such as flapping, rocking or spinning
- Has unusual and often intense reactions to sounds, smells, tastes, textures, lights and/or colors
There are also a number of medical and mental-health issues that frequently accompany autism spectrum disorder. These include:
- Gastrointestinal issues
- problems with feeding (being picky eaters, eating non-food items, ect.)
- sleep disturbances – insomnia, waking frequently during the night
Nola Bougie: Are there any support groups?
Maria: Absolutely, the best place to start is your local autism association and believe it or not, Facebook has several very supportive groups for parents
Nola Bougie: Are there any advocates? I only know of Toni Braxton because of her movie.
Maria: Well, once a child is diagnosed the parents become advocates. And you have to fight HARD – with schools, doctors, therapists, FAMILY! You are the voice for your child and you have to make sure they have the best quality of life possible. As for celebrities, as you mentioned Toni Braxton, there is also Shawn Stockman from Boyz II Men – he and his wife have a nonprofit organization called Micha’s Voice (http://micahsvoice.com/), Holly Robinson Peete is very active in advocating for her son and others with autism (http://www.hollyrod.org/). Jenny McCarthy also has an organization called Generation Rescue (http://www.generationrescue.org/) – Tisha Campbell-Martin, D.L. Hughley, Al Roker, Tommy Hilfiger, Doug Flutie, Dan Marino, and of course my brother-in-law, Ronnie DeVoe is a strong advocate in honor of his niece and nephew. The list goes on and on.
Nola Bougie: Where are you from?
Maria: I’m from Baltimore, MD currently living in Atlanta, GA.
Nola Bougie: What does Bougie mean to you?
Maria: Bougie to me is a state of mind. It’s believing in yourself, setting high standards, knowing your worth and striving to achieve your ultimate goals and aspirations.
For more information on Autism, please visit http://www.autism-society.org.