Most people hear the word "autism" and automatically think of Rainman, the 1988 film starring Dustin Hoffman as an autistic savant with an affinity for numbers and a painful need for routine. But as any parent with a child on the Autistic Spectrum knows, most forms of autism look nothing like that.
So, what are Autism Spectrum Disorders? According to the National Institute of Mental Health (NIMH), "Autism Spectrum Disorders (ASD), also known as Pervasive Developmental Disorders (PDDs), cause severe and pervasive impairment in thinking, feeling, language, and the ability to relate to others."
Our 10-year-old son was diagnosed with Asperger's Syndrome about five years ago. Asperger's is a very mild, or "High Functioning" form of autism, and it took time for family members to come to term with the diagnosis. "But he smiles and laughs and is affectionate! He can't be autistic!" one insisted. "That's can't be right," another declared. "He's just a quirky kid."
Some parents notice something different about their child from the beginning. Others see a change in a child who had been developing normally. Still others notice mild developmental issues that make them wonder if their child is just quirky, or if there's a larger problem looming. "Is it autism?" one mother asks herself. The answer: "Does it matter?"
Not in terms of how you love your child. But in terms of how to help your child navigate life? Absolutely.
April is National Autism Awareness month. Each week this month, I'll devote a post to issues that relate to life on the spectrum and the special parenting challenges that autism presents. This week, I'd like to introduce you to autism activist Mika Bradford.
Bradford became involved in the autism community nearly a decade ago, when her youngest son was diagnosed with autism as a toddler. A certified nutritionist, sales rep for nutritional supplement maker Kirkman, and a content specialist with AutismSpot, she has held a variety of positions with North Texas's Families for Effective Autism Treatment and is the founder of Natural Foods and Nutrition Consulting, Inc.
"My experience early on in my journey through autism was devastating and downright humiliating," Bradford says. "I am not alone when I say that many medical professionals belittled me and the questions I asked on behalf of my son. In the beginning, I had resentment but, over the years, I have come to realize that in many ways the physicians are just as much victims of the system as we have been."
For readers who don't have children on the spectrum, could you please share a couple of facts that surprise people when it comes to autism?
I think people are most surprised to learn that children with autism can get better, so much so that some children are considered to be recovered, losing their diagnosis. While this is not the outcome for every family, what we do know is that the quality of life for each child with autism can be improved.
Your readers may also be surprised to learn that many everyday things like what the children eat and drink can impact their moods and behaviors greatly. Research from major teaching universities are confirming what parents and a handful of professionals have known for over a decade -- that this condition is not only about the brain, but is affected by the other systems of the body.
Many people think that all children with autism are gifted, having special abilities. Only a handful of individuals with autism have "special skills." Most individuals with autism have difficulties in communicating, which can lead to inappropriate behaviors. The general public may see how parents handle these situations and not understand the reasoning of what is being done. Many parents, including myself, have spent thousands of hours and dollars learning how to parent using a positive approach, shaping the responses of the child (which ultimately hinges on our actions and behaviors as parents and caregivers). That may sound like common sense, but it is amazing how many parents of neuro-typical children never look at how their actions are impacting the responses of the child.
There are so many disorders that fall on the Autistic Spectrum -- Asperger's, ADD, SID, PDD-NOS, just to name a few. What are some of the "early warning signs" that a parent should watch out for?
Some of them are listed in Unraveling the Mystery of Autism and Pervasive Development Disorder: A Mother's Story of Research and Recovery by Karyn Seroussi. If a parent is concerned about their answers to some of these questions, then they need to speak to their physician about an autism screening.
Does your 18-month-old child's language development seem slow?
Has he lost words that he had once mastered?
Is he unable to follow simple commands such as "Bring me your shoes?"
When you speak to him, does he look away rather than meet your gaze?
Does he answer to his name?
Do you or others suspect hearing loss?
Does he have an unusually long attention span?
Does he often seem to be in his own world?
Autism is a developmental disability that impairs social and language development. It occurs in families from every class, culture, and ethnic background. It is not a mental illness, and it is not caused by trauma -- it is neurobiological and its symptoms can be greatly reduced by early diagnosis and treatment.
How has the autism community -- resources, research, treatment options -- changed in the 10 years since you first became involved with it?
Well I guess you could say it is completely different. When I started in the world of autism, very few people had even heard of dietary or nutritional support for autism. Families were told to just go home and love their children the way they were and instructed to look for long-term care and placement for the future. In just 10 years, the amount or resources has more than doubled. We now know that environment does affect autism and that this condition is not static as once believed. Researchers from prestigious universities like Harvard are confirming that this population has gastrointestinal and immune-mediated conditions that directly impact the behaviors and coping skills of these children. Treatments that are now available range from vitamin therapy to Applied Behavior Analysis to Hyperbaric Oxygen Therapy.
According to US Department of Education data, the number of autism diagnoses in children in the US has risen 644 percent from 1992-1993 to 2000-2001. Are doctors simply more aware of autism, and so are able to better diagnose it? Or are things previously dismissed as "quirks" now considered symptoms?
The diagnostic criteria have not changed that drastically in the past 10 to 15 years to account for the monumental increase in Autism Spectrum Disorders. If this was a condition that has risen due to better diagnoses, then where are all the adults with autism that should be accounted for? If the increase were due to children being reclassified, we would see the autism diagnosis increase and other disabilities decrease -- this has not been the case. The children who are now being diagnosed would never have "passed" as just being quirky. These children clearly have significant communication and social deficits that are debilitating.
What would you tell a parent whose child has been newly diagnosed with PDD-NOS?
I would encourage parents to leave no stone unturned when looking at what is the right therapy and intervention for their child. I would encourage them to give everything they have when trying to meet the educational and behavioral needs for their child. We have a saying in the world of autism, "You either pay now or pay later." This means that you ultimately have to find an effective way to deal with the challenges of autism. By providing the resources and support the child needs early on, you may bypass secondary consequences that would have arisen from those needs going unmet.
Parents must also give themselves grace. You must pace yourself to prevent burn out and, regardless of your financial resources, know that you can positively impact your child's life. Autism is an expensive condition to treat and live with, but resourceful families have found ways to work the system regardless of what funds are or are not available. You can do autism on a budget, it just may require a bit more planning.
Last, no matter what levels of functioning your child may be at, know that there is HOPE!
Read my full interview with Mika Bradford at Write. Edit. Repeat.
Do you have a child with autism? Please share your story or ask questions in the comments.
Lylah M. Alphonse is a Globe staff member and mom and stepmom to five kids. She writes about juggling career and parenthood at The 36-Hour Day and blogs at Write. Edit. Repeat. E-mail her at firstname.lastname@example.org.