Autism Awareness: Interview with Nancy D. Wiseman
MedicineNet interviews Nancy D. Wiseman, author of Could It Be Autism? A Parent's Guide to the First Signs and Next Steps and president and founder of First Signs, an organization dedicated to educating parents and professionals about the early warning signs of autism and other developmental disorders. As a parent of a child with autism, Wiseman believes in the power of early intervention.
Staff Writer, MedicineNet.com
Reviewed by William C. Shiel Jr., MD, FACP, FACR
April 17, 2007
Can you explain the link between genetics and autism?
We know there's a genetic link, but science and research is pointing to other variables, including environmental insults and immune system abnormalities, which may be contributing to the development of autism.
Environmental insults can be attributed to everything from mercury in immunizations to pesticides out on the lawn to chemicals in shampoo and deodorant and all the additives and dyes in processed foods. We're putting horrible things in our body. Then look at the percentage of kids with developmental, learning, and behavioral disorders - one in six, -- quite a dramatic rise compared to years ago. These toxins can attack the body of a genetically vulnerable child.
My daughter had a severe allergy to soy, a condition I noticed when she was 4 weeks old. I think it may have pushed her over the edge and compromised her immune system, making her vulnerable to toxins in the environment. It's not that kids with autism are getting more toxins in their system than other kids, it's just that they can't excrete them through the normal channels. The effects of mercury can mimic signs and symptoms of autism. Same with lead poisoning. We must consider everything we put into our body that could compromise our immune system.
Why are symptoms of autism sometimes evident at an early age, while at other times, the symptoms develop at age 2?
Often parents will miss the earliest signs, like lack of joint attention, gestures, or social reciprocity (the cornerstone of healthy development). Instead, they notice that their child is delayed in language or that they are not responding to their name when called. This is why it is so important that parents and professionals learn the critical, yet often overlooked, milestones for social, emotional, and communication development. Even before you see warning signs, it's imperative that parents chronicle the milestones and share them with their pediatrician.
At 4 months, is your child...
- Following and reacting to bright colors, movement, and objects?
- Turning toward sound?
- Showing an interest in watching people's faces?
- Smiling back when you smile?
These are a few of the early milestones that are critical to the foundation of healthy development.
The cornerstone of healthy development is social reciprocity - that back and forth, continuous flow of gestures, communication, and play.
When my daughter's first words came in, I counted the number of words because my pediatrician asked me at every well visit how many words she had. I didn't know that the quality of words was more important than the quantity. At two, my daughter had only four words and they were not meaningful words. Some were words that she echoed after hearing me speak them.
What are some significant warning signs of autism?
There have been studies that show impairments in social communication can distinguish infants who are later diagnosed with autism. According to research conducted by Drs. Amy Wetherby and Julian Woods at Florida State University, the common warning signs for autism in the second year of life are
- Lack of showing
- Lack of gestures: pointing, reaching, waving, showing
- Lack of sharing interest or enjoyment with others
- Repetitive movements with objects
- Lack of appropriate eye gaze
- Lack of response to name (something parents report very frequently)
- Lack of warm, joyful expressions
- Unusual prosody (rhythm and intonation of language)
- Repetitive movements or posturing of the body
Early red flags:
If your baby is showing any of these signs, parents should ask their physician for an immediate evaluation:
- No big smiles or other warm, joyful expressions by six months or thereafter
- No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter
- No babbling by 12 months
- No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months
- No words by 16 months
- Loss of speech
- No two-word meaningful phrases (without imitating or repeating) by 24 months
- Any loss of speech or babbling or social skills at any age
My child was babbling up until 6 months, but by 10 months, there was no more babbling. Any regression of any skill should be evaluated immediately.
So, then what would you say is the best way to determine if your child has autism?
If a child shows any of the red flags or early indicators, then that child should be evaluated by a developmental specialist - developmental pediatrician, or pediatric neurologist, psychiatrist, or psychologist - who has expertise in diagnosing and treating autism spectrum disorders. No two children are alike and the autism spectrum is very wide, ranging from mild to severe. Some kids may have many of the signs and features, while others may only have a few. Still, for the trained professional, it is easy to diagnose.
To meet the diagnostic criteria, there must be:
- Impairment in social interactions
- Impairment in verbal and nonverbal communication
- Restricted and repetitive patterns of behavior or interests
In addition, most of these kids have severe sensory issues and they may be over- or under-reactive to touch, sound, taste, or any of the other senses.
What advice do you give parents at an early age, as far as behavioral exercises?
Floortime is a wonderful approach that any parent can do at home. It's a child-led, systematic approach developed by Dr. Stanley Greenspan that encourages parents to interact with a child in a way that helps the child to advance developmentally. Floortime is getting down on the floor with your child and interacting and playing in an activity that interests the child. If you have a child who is only interested in banging pots, for instance, you get down on the floor with the child and bang pots until you can connect with that child. Over time you learn how to maximize the number of back and forth interactions by following the child's interests and motivations using gestures, play, and communication. Floortime can help a child climb the developmental ladder, one milestone at a time
All new parents should be taught how to do Floortime, not just those who have children with delayed development. It is particularly effective for children who are difficult to engage.
A 2006 WebMD article states that "too much TV time for toddlers may trigger autism," according to a study by Cornell business professors. Have you heard anything on that?
I don't think too much TV is healthy for any child, especially under 3. Children need to be engaged in activities with peers and adults-that's what's critical. As for TV triggering autism...I cannot give any credence to that study.
Is there a way to explain how drastic the differences are between a child who gets immediate help in the extreme early stages and a child who does not receive any developmental therapy until later?
The difference can be dramatic. Children were not diagnosed before school age and they did not have the kinds of Early Intervention services 10 or 20 years ago that we have today. Today there is tremendous hope for progress, and even recovery. More and more children are losing their diagnosis. That doesn't necessarily mean they've lost every attribute, but they may no longer meet the diagnostic criteria for autism.
While my daughter has incredible communication and social skills, she still has severe auditory processing and attentional issues. She is diagnosed with ADHD, bipolar, and PANDAS, which stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. PANDAS is an autoimmune disorder triggered by strep that attacks the basal ganglia in the brain (which effects movement and behavior) and may prove to be quite prevalent in a sub-set of children who have autism, bipolar, ADHD, tics, and OCD.
The kids who seem to make the best progress are those who are diagnosed early and have an individually-tailored, comprehensive treatment program consisting of biomedical, therapeutic, and educational interventions.
What is one extremely important piece of advice that you often give to parents of children with autism (in regard to any issue related to the disorder)?
Parents need to have a good support system in place, because this is more than a race and bigger than a marathon. It's a series of marathons throughout the years. You must pace yourself, and you need to put good supports in place, whether it's family members who can pitch in and do your grocery shopping or a neighbor who can watch your child while you take a walk or go to a movie, or do something for yourself. Somehow you have to find the time to spend with your spouse and other children. This life is very stressful and it either brings couples closer together or pulls them apart. It's draining on every family member. But, if you can look past the difficult times and focus on the incremental gains your child is making, you can begin to appreciate all the little things in life that you never thought about before.
Do you offer any advice or information on resources for low-income families with autistic children to get the help they need?
The out-of-pocket costs for treatments can be devastating for any family -- ,often costing between $40,000 and $100,000 per year, depending upon on your insurance policy. In my book, Could It Be Autism?, I offer suggestions for how to work with your insurance company. There's tremendous inequity in how insurance companies reimburse families, and often it boils down to how much you're willing to fight. Same with the public school systems. Parents have to know what their child needs and they need to become their child's best advocate. There's a Web site called Wrightslaw.com, which is fantastic. You can plug in your zip code and get a long list of resources for your state. Many states offer supplemental insurance plans based on a sliding scale. Some state agencies offer flexible funding for families in need.
In addition, the ARC of the U.S. has chapters in every state -- many have autism support centers that provide advocacy training, legal support, lending libraries, support groups, and an opportunity to network with other families. Networking is key to your survival. Check with the local autism organizations to see what they offer, attend conferences, contact local support groups, and engage with other parents while your child is having occupational or speech therapy and you are in the waiting room. It just might be the best free support group you can find.
Early Intervention, which is a state-run, federally-funded program for children 0-3 in some states and 0-5 in others, is offered at no cost to families in some states and based on a sliding scale in other states. Every county in the U.S. has an Early Intervention program. Parents need to be resourceful and seek out every available opportunity in their community or neighboring communities.
What would you say is the absolute most important first step a parent needs to take upon learning their child has autism?
Parents must take immediate action. The earlier (and more intense) the intervention, the better the outcome. Parents need to build a good team of doctors, clinicians, and educators and have the proper evaluations and reports in hand so they can get the services they need. You will need a good developmental profile of your child from a top-notch developmental expert so you can understand your child's strengths and challenges and begin to build on those strengths.
Another important thing is to take the time to really know and appreciate your child. Your child is still your child, and you're going to love him just the same. It's very important to be the parent and not always the therapist. Make time to be together and have a routine of singing, reading, or snuggling together-whatever works for you and your child.
Bottom line: Somehow, you must maintain your sense of humor. That's what will get you through the tough days. As devastating as it can be, there are many joyful moments. As a parent of a child with special needs, you look at the world differently, reprioritize what's important in your life, and appreciate the little things, especially the small accomplishments your child makes. You look at the world through a very different lens.
For additional information on autism, tune in to the autism podcast on MedicineNet.com: The Prevalence of Autism.