My Autism Story: Kari Has 1 Child on the Spectrum
Flickr photo by Beverly & Pack
Kari has two kids ages 5 and 9, the older of which is on the spectrum. She believes that "children can 'live down' to expectations as well as 'live up' to them — so supporting the child's abilities, rather than focusing on the weaknesses, is important." Her son's "official" diagnosis came when he was 3.5 years old and she says she was supported by the camaraderie of other parents she "met" online that were going through their own journey, with a child on the spectrum.
Kari lives in Northern California with her family, has been married for ten years, and blogs about life at kariannaspectrum.com.
How old was your child when you first suspected he might have autism? What were those initial signs?
My son started showing some delays at around age 2. He wasn't sure how to socialize with others and would become overwhelmed by loud noises and crowds. Essentially, he had the typical two-year-old behaviors, but magnified. His social language was behind the curve. But again, as so many kids grow at different rates, it is tough to pinpoint which delays are significant.
In those first moments when you found out your child's diagnosis, how did you react? And how did that reaction change over time?
My son's official diagnosis came after a lengthy evaluation with two physicians. One of these physicians was condescending and had some inaccurate and troubling views about those on the autistic spectrum. The other physician was quiet and just nodded as her brash colleague spoke. Unfortunately, he painted a "worst-case scenario" for us, so I was frustrated and nervous. Fortunately, I have a background in neuroscience, so took his "advice" and prognosis with a huge spoonful of salt! I wasn't completely surprised that my son received a label, but definitely was shocked by what this physician believed that label meant long-term.
As time has gone on, I've really doubted the label as being significant long-term. It may have described my son at preschool age, but doesn't describe him today as a perfectly capable third-grader.
What is his exact diagnosis? And what does that mean in laymen terms?
His diagnosis at age 3.5 was "pervasive developmental disorder, not otherwise specified." This is commonly referred to as "PDD-NOS." This is known as a "trashbag" diagnosis to catch those who exhibit some of the signs and symptoms of a variety of disorders on the autistic spectrum, but do not meet criteria for a specific one. Some erroneously believe those who have the PDD-nos label to be more "high functioning" than those with classic autism, but less "high functioning" than those with Asperger's Syndrome. This is not the case. Each child with the PDD-NOS label will have a different variety of characteristics of the autistic spectrum. Some children with the PDD-NOS label will later fall into one of the more specific categories of autism; some will not. I do not believe that my son would meet criteria for any of the autistic spectrum disorders at this point. He is now nine.
What are 3 things you wish someone would have told you about autism that you had to learn on your own?
- Those who complain about having to "fight" for their children aren't kidding. The road to find the appropriate educational environment for my son took several years. Unfortunately, it is important to jump right into the battle armed with knowledge of your legal rights (try wrightslaw.com) and with the understanding that YOU know your child better than a random doctor or medical social worker. I had hoped treatment would be collaborative, but unfortunately it really is a fight. You might have to open your pocket to get the appropriate help rather than relying on the free methods because the time and stress involved with the fight can be exorbitant. Prioritizing is a must.
- Sometimes the best treatment is nothing at all. For example, occupational therapy (OT) is common for those with sensory needs, and social skills groups can assist with social and/or behavioral challenges, but at some point, choosing to spend a lot of time and money on therapy can be counter-productive. The child can internalize that he or she is "different" and might start to regress. Children can "live down" to expectations as well as "live up" to them -- so supporting the child's abilities rather than focusing on the weaknesses is important.
I had to ponder this trade-off when my son showed an interest in soccer. He couldn't both go to a social-skills camp with OT and play soccer, so we had to choose. The OT and social skills were both "preparing" him for real life, so it made sense for us to let him play soccer instead of going to a therapy-specific camp. After all, soccer is a motor activity, and learning teamwork is a social activity!
Along the same lines, time and maturity are a big deal: the child first diagnosed is not the same child several years later. In that way, doing nothing other than supporting your child as he or she grows can be just as therapeutic, or even more so, than packing his or her schedule with expensive therapy appointments.
- Environment is everything. A school or program that seems perfect on paper might be a horrible disaster for your particular child. Every child (whether on the spectrum, with any other behavioral label, or completely neurotypical) has a different personality profile, and has different strengths and weaknesses in learning styles. I learned this the hard way when we tried several different schools for my son that created more behavioral trouble rather than less. Once he was in the right environment, he had the behavioral profile of someone more neurotypical than on the spectrum. Patience is difficult when it seems as though so many challenges are being thrown at you, but finding the right environment really is worth the research and hassle.
What or who has been your greatest resource for information and support during this time?
I hate to be a downer, but many avenues of suspected support led to nowhere. It is important for the parents of the newly-diagnosed to know that there will be many hoops to jump through, and most of them will provide no tangible results. There were a few email lists (both local and more widespread) and a couple local in-person support groups that gave me some valuable information, but I had to sort through a lot to discover what was applicable to my particular child. I really enjoyed "meeting" other parents of kids on the spectrum online through blogs, because I learned that I wasn't alone. In that way, I was supported by camaraderie, not necessarily from specific information.
What's been the most challenging part of dealing with a child with autism?
Well, "dealing with" is a difficult way to propose "parenting a child with autism" — so in some ways, the wording of the question shows my concern over the bias against those on the spectrum! I would say the most challenging part of being a parent of someone on the spectrum is that the public has so many misconceptions about autism that we parents are frequently seen as being poor disciplinarians or otherwise "bad parents."
While I recognize that all mothers receive unsolicited advice at times, the parent of someone on the spectrum receives quite a lot of negative comments, unhelpful suggestions, and assumptions that we can just do something, as though there is a simple solution to our children's particular difficulty. There is an assumption that we are helpless, somehow not capable of parenting our child. Instead, our tired eyes might be because the behaviors of someone on the spectrum can be trying at times. Our mood will be made even worse if we and/or our children are judged harshly in the middle of a difficult situation.
While the public perception is difficult, the assumptions of the medical community can be even more dangerous because those individuals are supposed to be "helping." Many medical professionals don't understand that kids grow up. They seem to assume that a child's social, mental, and behavioral growth will be stuck at the time of diagnosis. But even the label of "pervasive developmental disorder" has the word "developmental" in it; in other words, "develop." PDD-NOS is considered a developmental delay, so shouldn't be seen as complete arrest. It might take a child with autism a little bit longer to obtain a particular skill or schema, but the delay might not be very long. In fact, many kids diagnosed as on the spectrum when young may meet criteria just a few years later.
Tell us something about your child that's special or unique that you love.
My son has a fantastic imagination. He wants to be a video game designer when he grows up. He'll attend a video game class during spring break, and I expect that the characters he creates will be both silly and stupendous!
Finally.... The debate around the cause(s) of autism is very heated right now. What do YOU think causes autism?
First off, autism isn't a binary condition. It isn't that someone "has" autism or "doesn't have" autism. People who are considered on the autistic spectrum have a wide range of behaviors, strengths, weaknesses, social delays, sensory processing concerns, and/or other quirks. In many cases, the same child could probably meet criteria for AD(H)D, OCD, or SID if the evaluator happens to be biased towards a particular diagnosis. Many people have one or many of the various "symptoms" of autism, but just varying degrees. It is when these particular characteristics happen to "meet criteria" that the label is officially applied.
Since those on the autistic spectrum are by definition a spectrum of different people, the reasons behind their particular personality profile differ as well. One frequent characteristic of someone with autism is particular sensitivity to stimuli. Loud noises are too loud, tags in clothing are too scratchy, and so forth. It is therefore pretty reasonable to expect that these individuals can be sensitive to other stimuli as well, such as fragrances or foods. In my son's case, we found that petroleum-based food additives can impact his behavior, just like pharmaceutical agents impact behavior. While this is true for my son, I don't assume that all people with autism would benefit from dietary invention. Similarly, my son regresses after vaccines, but I don't think vaccines "cause" autism. I definitely believe in a strong genetic component for spectrum-like traits, but can see how the environment can make a big difference in how those traits manifest themselves.
To take it a step further, "environment" can mean two different things: both the internal environment of the child (like diet and/or medication) and external environment, increasing or decreasing the likelihood that certain autistic-like behaviors might appear. For example, avoiding tomatoes in my son's case will help him be calmer regardless of the situation. But then I witnessed firsthand how the educational environment made a big change in one of my son's classmates when they were in first grade:
The boy was face-down on the concrete. He rocked back and forth as he screeched, cried, and moaned. To any observer, he certainly looked "autistic." The rest of the class was estimating watermelon seeds from their own freshly-cut slice of watermelon. They then had to dig out the seeds to discover the actual number of seeds, and compare with their estimate. Since I knew about sensory aversion, I asked the screaming child if he'd be willing to count the seeds as I touched them. I assured him that he didn't have to touch the watermelon. Immediately, he perked up and very articulately told me that would be fantastic. Suddenly, he was behaving in a "neurotypical" way. I took away the sensory fear, and with it, the "autistic" behavior went away. This boy definitely has sensory processing issues, but with the right environment, is just as capable as any of his "neurotypical" classmates.
Not all people on the autistic spectrum can swap out their environment in a way that can create such a dramatic transformation, though. While many on the spectrum can learn coping skills, many cannot. It is important to recognize that parents of these children, teens, and adults aren't "bad parents" because their offspring do not "improve." Just as with the general population, there is a great deal of variety in the mental, physical, and behavioral capabilities of those on the spectrum. Not all of them are brilliant, and not all of them are mentally challenged. Most are somewhere in the middle! Even the concept of "intelligence" is difficult, since there are some who might not be verbally articulate, but may show exceptional skill using written communication.
In some cases, "autism" isn't a disorder. Rather, the symptoms are personality characteristics. It is therefore difficult to talk about causes of autism, just as it would be difficult to pinpoint what makes someone an introvert or an extrovert, athletic or studious, and so forth. I'm afraid it would take an entire book (and then some!) to flesh out all of the different variables as to what creates someones personality, and at what point these characteristics become statistically significant enough to meet criteria for a particular diagnosis.
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