These days, almost everyone has at least heard of autism, though their mental image of the disorder may vary as greatly as those who have it. Unfortunately, this diagnosis is still on the rise, with new numbers being released by the CDC just in time for National Autism Awareness Month. 1:88 children are now thought to be on the spectrum, with a greater number of boys affected than girls. Professionals agree that early intervention services, meaning services begun during pre-school years is instrumental in a better more functional outcome for autistic children. And yet 40% of these children are not diagnosed until after they are 4 years old, even though symptoms and parental concerns often begin years before that. The American Academy of Pediatrics recommends screening between 18 months and 2 years.
So, what is the problem? Why is diagnosis postponed so often?
I know when I was trying to get help for my son we ran into a problem with doctors wanting to “rule out autism” or “avoid giving him a label” for the first two and a half years after the Autism word was first raised. From conversations with other parents of autistic children, this seems to be more often the norm than the exception. For two and a half years before I heard the “A” word in reference to my son I heard very different advice from his pediatricians and other ‘well wishers’.
The common refrains from doctors were:
“Boys just talk later than girls.”
“Boys just throw worse temper tantrums.”
“Every child develops on their own schedule.”
“Don’t worry, one day he’ll just start talking in complete sentences, I see it all the time.”
“Well his hearing tested fine, he’s just a difficult child.”
Common refrains from “well wishers”:
“You have to expect boys to be more active.”
“Maybe you aren’t being consistent enough with the rules.”
“You aren’t talking to him enough, talk to him more and he’ll start talking.”
“If that were my kid I’d spank him.”
“He just wants attention.”
“He’s just a typical boy, you’re used to girls.”
“You baby him too much; you need to leave him to cry it out.”
“Make him use words before you give him anything.”
As a first time mother, and the oldest of three girls, I thought maybe some of these were valid points. Maybe I didn’t know enough about raising a boy. Maybe my fears and concerns really were unfounded. Again, I’ve heard many many similar stories from other parents of autistic children. This was back in 1996-1999. Autism was on the rise, but it wasn’t discussed as often, it wasn’t as public as it is now. I knew something was wrong, but when your pediatrician, and more than one of them tells you over and over that everything is fine and you’re just worrying too much, you begin to doubt yourself.
Autism was first brought up when my son began Head Start at 4 years old. His speech was still echolic, meaning he repeated what he heard, word for word, inflection and all. If you asked him his name, for example, he would repeat me teaching him to spell his name “Say R, Say O” etc. This was the year I began my internet search, I finally had a possible name to go with what was wrong! The more research I did, the more things fit into place. And then I tried to get a diagnosis.
The first road block was the doctor who “didn’t want to label him” telling me he was too young for an autism diagnosis that it was almost never done until 6 or 7 except in the most severe cases. Once more I heard the mantra of giving him more time, boys just develop slower. I pointed out that I wasn’t the only one worried, his teachers were worried as well, so was the speech therapist he’d started to see in head start. Still, they wanted to rule it out, or at the very least, postpone the label. The label was bad, they said, it would follow him forever.
Labels can be bad, if they’re the wrong one, or if they are used punitively. But without the label, the insurance wouldn’t cover any of the therapies he needed. No occupational therapy, no physical therapy for his gross motor delays, no behavioral therapy, no speech beyond what Head Start was providing, no ABA, no sensory integration, NOTHING. Without the label the insurance wouldn’t acknowledge the problem. Several different referrals and doctors later, he had several labels, but none of them were the right ones. His diagnosis looked like this: ADHD, Oppositional Defiant Disorder, Speech and language delay, Manic/Bi-polar, Obsessive Compulsive Disorder.
If you look at the symptoms of autism and look at these many labels, you will notice that autism can and does often include ALL of these symptoms. Instead of the one correct label, they insisted on giving him many labels for symptoms that he showed. This did allow him to attend a full day behavioral therapy program when he was five, but it also caused a huge round of medication trials, none of which worked well and some of which he had large and negative side effects to. It also led to the behavioral therapy program’s psychiatrist threatening to have my son taken away when I objected to his lying to me and turning my son into a medicine guinea pig for his ‘pet’ diagnosis of ADHD.
It wasn’t until my son was getting services through the county mental health program during his Kindergarten year (when he was 6) that we finally got the accurate diagnosis. His behavioral therapist, the case manager and I sat down with the county Psychiatrist because the Neurologist he’d wanted my son to see had dropped Medicaid before the appointment; this was the third time that had happened in the past year. He was confused as well by the mass of diagnoses my son had all before age 5. So, we sat down and went over the Autism screening check list, both for his current behaviors and ones he’d had when he was younger. Finally, he had the correct diagnosis of High Functioning Autism. Of course all those other diagnoses are still on his record as well.
So, my advice to parents everywhere: if you think there’s something wrong, don’t let a doctor convince you there is not. You see your child every day, all day; they see your child once every few months for 5-15 minutes. If your doctor is not willing to listen to your concerns and at least do a routine screening, find a new doctor. Stick to your guns. Be persistent. That doesn’t mean insist on a cat scan every time they bump their head, but if there is a problem that is ongoing, that is interfering with their life, trust your instincts. If you have to, remind them that the American Academy of Pediatrics suggests routine screening for developmental delays and autism in particular.
Here are some symptoms to watch for. This is not an all inclusive list and every autistic child is a bit different, but difficulties in multiple categories, especially multiple aspects of each category should be looked into. Not every child will display the same symptoms, which is part of the difficulty in diagnosing this disorder.
Speech and Language:
• A lack of speech developing by 12 – 18 months, or, speech developing and then stopping or regressing.
• Repeating of speech and phrases beyond when it is developmentally appropriate.
• In an older child, he takes things literally, has trouble understanding humor.
• Difficulty with conversation, talks at you instead of with you.
• Frustration with communication difficulties often leads to ‘melt downs’ or ‘tantrums’.
• Lack of making or maintaining eye contact.
• Can’t read body language or facial expressions.
• Difficulty sharing interests (especially listening to anyone else’s).
• Difficulty forming friendships, or even understanding what a friend is or is not.
• Lack of empathy for others.
Limited Interests and Unusual Play:
• Lining up toys instead of playing with them, or spinning them in place where not appropriate to toy (seems to be obsessive over it)
• Unusual focus on part of a toy rather than the whole thing (turns a car over and just spins the wheels for extended periods of time for example)
• An obsessive need for routine, any break in routine can cause melt downs and tantrums, even over the smallest details.
• Rocking, hand flapping, banging head into wall, biting self to calm.
• Lack of or very restricted imaginative play (may act out a favorite movie word for word and action for action but can’t put that in a new situation for example).
A large percentage of autistic children also have sensory issues. Sensory issues can manifest in a LARGE range of areas, but here are a few of the most common.
• Doesn’t like to wear certain clothing, or certain fabrics
• Won’t eat hot food, or conversely cold food
• Avoids certain food textures
• No sense of volume control, and/or can’t stand loud noises or seems over sensitive even to quiet noises
• Seems to need motion
• Avoids certain motion (for example, loves to jump can’t stand to swing)
• Piles heavy things on top of self.
• Can’t handle water running over the body (bath time, and washing the hair in particular is a huge battle), or can’t handle being dirty (obsessively).
If you suspect your child is autistic, there are a few symptoms you should be aware of. Most autistic children have little ‘danger sense’. They will climb shelves, jump off tall objects, pick up sharp things, put things in their mouths, run into the street, and wander off (even in the middle of the night) beyond when a developmentally typical child would do so. Many autistic parents buy keyed dead bolts for doors, special locks for windows, or put alarms on doors and windows to prevent late night wandering as sleeping problems are also frequent with these children. This is also a problem in schools as a child may leave a classroom to go to the bathroom and wander off campus alone (my son did this many times in head start, and even twice in elementary school). Many police departments have “wandering risk bracelets” for adults with Alzheimer’s, if you inquire often you can get one for your autistic child as well. These bracelets serve two functions. One, when the officer sees them they know there is a disability, which means (usually) that they’ll handle the child with a bit more care. And two, if your child wanders off wearing one of these, their first reaction is NOT to call DCF with a neglect charge. It looks similar to a medic alert bracelet, or at least my son’s did.
Maybe the increase in diagnosis is from better diagnosis and recognition of this life altering (for child and family) disorder. I hope that is the case, because the outcome can be very good when the child gets the support they need to understand the world they live in. But with 40% still being diagnosed after age 4, early intervention is underutilized. Doctors are still resistant to giving the diagnosis so therapy can begin. This is, obviously, more of a problem with children at or near the poverty level who’s parents don’t have the money to pay thousands of dollars a year in therapy out of their pockets. Even if the parent has a job with good insurance, therapy is not covered without the diagnosis. More states are adding laws requiring insurance companies to cover therapies for Autism, but again, that doesn’t help those who are not yet diagnosed. It is imperative that doctors listen and respond to parents’ concerns. 1:88 is a high rate of affected children. 40% of those are diagnosed after the most effective years of therapy have passed.