An Epidemic of Disease or of Diagnosis?

Kudos to the LA Times for addressing such an important topic in its series of articles “Discovering Autism”. The first one was published on December 11^th 2011 under the intriguing title of “Unraveling an Epidemic.” (See: http://www.latimes.com/news/local/autism/la-me-autism-day-one-html,0,1218038.htmlstory)

Recent data shows that cases of autism have increased twenty-fold (yes, 20) in the last thirty years. This has caused many to question whether or not we are dealing with an epidemic.  Until recently, conclusions were drawn that this increase was due to very different reasons, such as environmental toxins, or “refrigerator mothers”. However, what is becoming increasingly clear, and what the article addresses, is that in fact there is more a surge in diagnosis rather than in disease.

I tend to agree with the explanation that the explosion in cases being diagnosed is due to more social and cultural awareness, meaning a broader concept of the condition and harder looking for it. The LA Times covers this in their article:

“Rich or poor, children living near somebody with autism were more likely to have the diagnosis themselves. Living within 250 meters boosted the chances by 42%, compared to living between 500 and 1,000 meters away. The reason, this analysis suggested, was simple: People talk. Autism is not contagious, but the diagnosis is.”

“Dr. Nancy Niparko, a child neurologist in Beverly Hills, said that whether she identifies a child as autistic can come down to whether she believes it will do any good. If it's going to improve the possibility of getting services that will be helpful, I will give the label,” she said.”

“Roy Richard Grinker, an anthropologist at George Washington University who has studied autism around the globe, said that what some call an epidemic is really an “epidemic of discovery. Once we are primed to see something, we see it and wonder how we could have never seen it before,” he said.”

This is actually a good thing because with this diagnosis, families can obtain services that were not available to them 20 years ago. Those of us of a certain age clearly remember that kids displaying symptoms that we now know fall under the spectrum of Autism disorders, were diagnosed with Mental Retardation or Psychosis, and usually heavily medicated and relegated to an isolated room in the house, or worse, institutionalized for life.

“The view of autism as invariably severe and lifelong still prevailed in 1980, when it was first listed in the Diagnostic and Statistical Manual of Mental Disorders, the bible of U.S. psychiatry”, per LA Times’ article.

A diagnosis that used to be stigmatizing, frightening and paralyzing is preferential now. Parents even go to court to obtain the diagnosis because they know that with this “label”, they will have access to state funded services they couldn’t otherwise afford.

“Most experts see wider diagnosis — and increased spending — as progress. Children who in the past would have been overlooked, misunderstood or deemed hopeless cases are receiving help.”

Truth be told, nobody knows what causes Autism. One day we’ll get there, maybe. In the meanwhile, parents need to be knowledgeable and proactive in getting their child necessary and effective help; and we, professionals, should get extensive and ongoing training in evidence-based treatments that are effective. I emphasize effective because every waking moment of these children’s lives is precious. There is no time to waste on non-scientific and ineffective approaches.  

“Of all the advice Laurie Bailey received when she began seeing signs of autism in her son, Benjamin, now 8, one piece proved the most valuable. “If you embrace that word” — autism — “you will get far more services,” a friend told her.”

The second article of the series, “Warrior parents fare best in securing autism services”, published on 12/13/11 (http://www.latimes.com/news/local/autism/la-me-autism-day-two-html,0,3900437.htmlstory), expands on this:

“In both the developmental system and the schools, the process for determining what services a disabled child receives is in essence a negotiation with the parents. The financial squeeze on school and state budgets has turned up the temperature, leaving officials caught between legal mandates to help autistic children and pressure to curb spending.”

“Part of what you're seeing here is the more educated and sophisticated you are, the louder you scream and the more you ask for,” said Soryl Markowitz, an autism specialist at the Westside Regional Center, which arranges state-funded services in West Los Angeles for people with developmental disabilities.”

Every parent should learn from these examples! It’s about getting educated, increasing awareness, embracing the diagnosis, and ultimately getting help. Let’s join hands in our crusade to assist these beautiful souls become the happy and productive human beings that will contribute to a better society and everybody wins.

Daniel Adatto, BCBA

Holidays and Autism

Holidays typically are a time of great joy, sharing and spending time with family and friends. However, for those of us with family members who have special needs, the holidays can present unique challenges. What is perceived as joyous to most of us can often be overwhelming to someone with autism. Holidays cultivate many stressors that may cause a child to erupt: absence of routine, overstimulation, being away from home, and one important one that many of us may overlook – parents’ stress.   Kids are very tuned into their parents mood and when they sense you are stressed, they can get extremely overwhelmed. They need you to stay grounded and when you aren’t, their behavior may show it.

Being sensitive to your child’s needs and keeping familiar routines in place are the best ways to avoid holiday havoc. Here are some helpful tips to help keep parents sane during the holidays. 

Prepare, Prepare, Prepare.

Prepare your child for the social event: Explain to your child what is going to happen when there are changes in routines ahead of time. Be specific about every detail that might occur in any given situation. If part of your holiday itinerary includes airport travel, prepare your child for the crowds he might encounter and explain him about security procedures. Be sure to include the fact that he might be asked to remove his shoes, walk through a “funny machine” and that someone might look through his things. New or unexpected situations can be very frightening for a child with autism and being prepared can help him cope. It may be helpful to create a picture book that will show the sequence of events and prepare him for the sights, sounds and people he might encounter.

Prepare the social event for your child:

Avoid long trips whenever possible. Airports, planes and long car rides could be very stressful.

Stick to your normal routine as much as possible. Keep sleep and meal/snack times as close to their usual time as possible.

Bring your child’s favorite foods with you. Unfamiliar foods will leave your child starving, which is literally a recipe for disaster.

Bring your child’s favorite movie, video game system, sensory and security toys. Having familiar items will give him a sense of normalcy and comfort.

Pre arrange for a quiet space for your child to retreat to when stimulus gets too intense and he needs a break.

Don’t give in to social expectations (“People are looking at us”) or worry about insulting your host or family members if you don’t abide by social norms. You are your child’s advocate, not the world’s. This means you don’t need to force your child to hug, kiss, shake hands or play games with anyone if they don’t want to. Try to motivate him instead. This goes for clothing as well. Don’t force your child to wear something or comb his hair if he really doesn’t want to. You have to pick your battles. In general terms, don’t force your child to do anything unless it involves a safety concern or an emergency.

Educate your family ahead of time if you feel necessary. You can explain to them possible behaviors that might occur so that you don’t find yourself constantly apologizing for your child’s behavior.

Know the triggers and read the precursors of challenging behaviors, such as facial expressions, changes in breathing, body movements, etc. Look for the signs that your child may be unraveling and retreat to your safe place. Preventing a meltdown is always easier than managing a tantrum once it begins.

Finally, relax and enjoy. You are your child’s barometer and if you are stressed out, he will be too.