Autism awareness basics

Autism awareness puzzle pieces graphic

Unaltered image. Hepingting, Flickr. CC license.

April is Autism Awareness Month. Autism Spectrum Disorders (ASD) have garnered a lot of attention over the last several years, first with concern that childhood immunizations cause autism and now to recent changes in diagnostic criteria for autism in the newly revised “Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition” (DSM-V). However, even with autism in the spotlight, confusion about what it is, and how and where to get treatment, still exists. Below are a few tips that may help your family.

What is it?

Autism is a neurodevelopmental disorder, which means that there are differences in how one’s brain with autism develops in infancy compared to one’s brain in infancy who doesn’t have autism. Impacts on individuals with autism are social interactions, verbal and non-verbal communication (inability to recognize and respond appropriately to social cues), and restrictive and repetitive behaviors (inflexible and need for routine, repeating words, or moving the body in a certain way). Autism can range from mild (little impairment, mostly self-sufficient) to severe (significant impairment and requiring regular assistance and/or supervision). The causes of ASD are unknown but there is a hereditary component.

How do I know if my child has autism?

If you suspect that your child has ASD, contact your child’s pediatrician. Typically the doctor will ask questions about your child’s development pertaining to communication, social interactions, and other behaviors at the 18-month, well-child visit (this is the age when screening for ASD can take place). If there were any birth complications, such as prematurity or a prolonged hospitalization for your infant, your child may have been referred to a neurodevelopmental clinic where all areas of development are assessed and appropriate recommendations are provided.

If your child is older (in pre-school or grade school) and has difficulty making friends or interacting with/joining other kids in play, doesn’t engage in make-believe play, does poorly with change, may not seem to understand jokes, and often adheres to literal meanings, you can ask your pediatrician for a referral to a clinic that specializes in assessing children for developmental disorders including ASD.

Typically these several-hour assessments consist of paperwork and questionnaires about your child’s health and behavior, as well as your family’s health. If your child is in school, there may be some questionnaires for teachers. Your child will be evaluated by a physician, psychologist and/or neuropsychologist (someone who specializes in testing to determine learning processes and other behaviors of the brain), and a speech and language pathologist. Meeting with a genetics counselor may also be part of the comprehensive evaluation.

Feel free to ask the clinic what kinds of tests they will do. The Autism Diagnostic Observation Schedule (ADOS) is the gold standard for assessing ASD, however it is very possible to obtain an accurate and thorough assessment without using the ADOS. You may want to contact your insurance provider to make sure the evaluation is covered or what expenses you will be responsible for paying.

My child was diagnosed. Now what?

Starting treatment as soon as possible for children with ASD is highly recommended. Treatment will primarily consist of meeting with a psychologist or therapist, but preferably a therapist that practices Applied Behavior Analysis (ABA). ABA uses effective tools and strategies to teach children with ASD new behaviors and skills necessary for socialization, communication and adapting to change. Therapy for ASD can be very frequent such as multiple times a week.

Also depending on the severity of your child’s ASD and other medical or mental health disorders, medication may be part of the treatment plan and prescribed by a physician.

It’s important to connect with other families that have children with ASD, and there are several reputable national organizations such as Autism Speaks, National Autism Association, Autism Society of America, and Center for Autism and Related Disorders (CARD). Several of these national organizations have local chapters that offer support groups and other resources for families.

Is there anything else?

Yes. Sometimes having a child with special needs such as ASD can be stressful for the entire family. Siblings may be embarrassed about the behaviors associated with ASD, and angry or jealous about the amount of time parents may have to spend with the child with ASD. Marriages and relationships with significant others can become strained and tense.

Working with your health care providers can help you learn ways to successfully manage behaviors associated with ASD. Educating siblings and extended family members can also help to decrease stigma and lead to more enjoyable outings and trips. For children with severe ASD there may be other resources available such as respite care.

– Carnigee Truesdale-Howard, PsyD, ABPP, Pediatric Psychologist with Beaumont Children’s Hospital Divisions of Hematology/Oncology & Gastroenterology

A Smile with Gravitational Pull

Boy and two girls in snowy mountains

Dominic and his sisters

Some have said that having a child with autism is like living on a roller coaster. While that may be true for some, I don’t find parenting an autistic child to be exhilarating or consistently fun. Rather, parenting a child with autism brings with it the profound experience of living the full range of life’s emotions often in a span of mere hours, but always within the same day.

The sun begins to rise with my nearly 14-year-old son who will not get dressed for school while his younger sisters do so willingly. While the morning routine doesn’t change, his seeming inability to get ready for school independently is a source of great frustration.

As the early morning ticks closer to a ringing school bell, we experience happiness: two months ago, our son learned how to tie his shoes independently … sometimes. And despite a long list of life challenges, he generally shuffles off to school with a bellowing laugh. I also experience great happiness with our risky decision to move our family 90 miles away into a school district that better understands the needs and challenges of autistic children.

As the school day turns into late afternoon, emotions flip. Emotions are now rooted in sadness as our son rarely receives unsolicited phone calls or invitations from other kids to play, hang out, or do the things that most 13-year-olds do after school. We experience sadness at the many miles of social, scholastic and occupational challenges that lay ahead.

As the afternoon segues into evening, we sometimes experience disgust when our child is the innocent target of snide, reprehensible and outrageous comments from intolerant and ignorant persons while we attempt to integrate our lives within the community.

As the evening turns into our kids’ bedtime, we transcend the day’s challenges and now experience surprise, hope and the deepest love; my son surprises us with his growing vocabulary, wonderful sense of humor, and a smile so full and wide it has gravitational pull. As long as our son continues to grow, develop and learn, we also have hope.

As the evening wanes into night, I often go to bed with the final emotion of the day. Fear. Who will care for and attend to our adult child after my wife and I pass? How will we finance his care?

My son has taught me that the little things matter and must be revered. Perhaps it is because we often experience every emotion within a single day that we feel more attune to life’s nuances, subtleties, and the vapidity of daily life. Or maybe, and like my autistic son, my senses are heightened to a place where the colors seen are more vivid, sounds heard are crisper, foods tasted are sharper, things smelled are more pungent, and physical touches tenderer.

Regardless as to the reason, my son has made me into a better man. And he has brought me closer to humanity and bestowed upon me the virtue of humility. For these lessons, I am forever his.

– Steve Geskey, father of Dominic

Not Your Average Candy-Seeker

Boy dressed as a construction barrel for Halloween

If you knew my neighbors in the white house, you could ask them about the Halloween when a kid dressed as a construction barrel waltzed through the front door, refused a handful of Tootsie Rolls, and demanded to know where the bathroom was while pulling down his pants.

If you knew the lady three houses down, you could ask her about the boy who refused all the candy she had to offer because he didn’t like her selection, but he did like her chandeliers with the energy-efficient CFL bulbs.

If you knew the family at the end of the block, you could ask them about the child who was more interested in turning on the foyer lights than getting a full size KIT KATTM or TwixTM bar.

Two years ago my son (the construction barrel) was the only kid in our subdivision who wasn’t interested in filling his orange plastic pumpkin with candy. His Halloween agenda had nothing to do with sugar and everything to do with the quirkiness that can accompany autism.

For my son, October 31 is one of the best days of the year because he thinks it’s his ticket into all the houses in the neighborhood. In his mind it makes sense that when someone opens the front door, it’s an invitation inside and he’s happy to accept it.

Opening the door to him isn’t a quick “here’s your candy,” “love your costume,” or “have fun trick-or-treating.” It’s an education on understanding those who are different.

Some of the neighbors were good sports but others were confused and didn’t know how to respond. I can’t blame them but I can educate them and anyone else who opens a door on Halloween. That advice is simply:

  • Be understanding
  • Be patient
  • Be aware

Not every child who comes knocking fits the mold of a costume-clad, candy-seeking kid who’s spent the last 364 days salivating over this one night.

Halloween can range from confusing to uncomfortable or worse for some kids — not only those with autism but children who are shy, allergic, diabetic or any other reason that makes trick-or-treating a challenging experience.

For the children with dietary restrictions, perhaps having a few nut-free or gluten-free choices, as well as non-candy options would make all kids feel included. For a child with autism, or someone who’s simply shy, approaching a stranger’s house for candy is awkward and uncomfortable; it’s OK if a child doesn’t say “trick-or-treat” or even “thank you”.

I know many parents who practice Halloween ahead of time to make it easier when October 31 rolls around. They practice their “trick-or-treats” and “thank yous”, and get their child used to wearing a costume and accustomed to walking around the neighborhood. They may even use what’s called a social story to show appropriate social interactions as a way to prepare.

When we first started trick-or-treating, my son hated everything about the whole experience. He hated being outside in the dark. Some of the decorations were too scary. His costumes were sometimes uncomfortable and he had no interest in candy.

Someone once asked me why we bothered to take him out if he hated it so much. It was a good question but for us, staying home wasn’t an option. For my son, like many children with or without autism, the more we expose him to things the more he becomes used to them and can even enjoy or at least tolerate a previously dreaded experience.

After a few years of trick-or-treating my son now looks forward to Halloween as much as his siblings do. Most of his enthusiasm is over the prospect of getting inside the neighbors’ houses but that’s fine with me.

– Jen Lovy, Beaumont Parenting Program Volunteer

Meet the Beaumont Center for Children’s Rehabilitation

Girl on floor puzzle holding a letter.

Floor puzzles offer great visual, sensory and motor skill development.

Therapy services at the Beaumont Center for Children’s Rehabilitation have become very diverse. Not only has our program grown geographically (we now have clinics in Royal Oak, West Bloomfield and Grosse Pointe), but we’ve broadened our specialty services and our scope of care.

Overview
We provide therapy for children with long-term rehabilitation needs, but we’re focused on shorter bursts of therapy–capturing a child’s key developmental times, providing therapy, and then taking a break until they are ready to resume again. Often children are transitioned into other programs either within our clinic or within the community, which provides for intensive and successful therapy and better long-term results. We also provide therapy for children with more short-term needs where a brief course of treatment is provided and they rarely need to come back.

Therapist holding a child on foam slide.

In our sensory rooms, children are able to participate in therapy on swings, padded slides, large cloud pillows, and ball pits.

Services Offered
Our patients come to us with neurological, orthopedic, sensory and developmental needs. We’re trained to work with a large range of diagnoses and ages (birth–18). In addition to offering groups for children with special needs, we also offer groups for children without a diagnosis. For example, we offer very successful handwriting groups for children who are struggling with all aspects of handwriting and letter formation.

We also offer group programs which help to enhance therapy goals, and/or offer therapeutic activities for children who may not need intensive therapy. We offer adapted dance, martial arts, sports groups; as well as sensory integration, feeding, social, peer support and vision groups.

Our programs fall under four main therapy areas:

  • Occupational: Focus on fine motor, arm strength and movement, dressing, eating, vision, sensory and feeding (picky eaters, babies with latching or swallowing difficulties).
  • Physical: Focus on gross motor, leg strength and movement, walking, head and neck movement and position
  • Speech Therapy: Language skills (expressive, receptive, articulation)
  • Social Work: Family and patient coping skills, emotional support, assist with insurance and community assistance.
Child doing therapy using a universal exercise unit.

Every clinic has a universal exercise unit that helps children isolate muscles for strengthening and they can stand inside and experience standing and jumping with the help of bungee cords.

Getting Help
If you have a concern about your child’s development or recovery from an injury, please talk to his/her physician about a referral to therapy. While children all develop or recover from an injury at a different pace, even siblings, don’t disregard concerns you have. A parent’s instinct is important and your pediatrician can help you determine the best plan. We can evaluate and offer suggestions for ongoing treatment or a program for home. For more information, visit us online.

Have a wonderful summer; this is a great time to develop motor, sensory and language skills by just getting outside and playing with your children.

– Debbie Adsit, OTRL, is the Supervisor, Pediatric Rehabilitation at the  Beaumont Center for Children’s Rehabilitation. She can be reached at (248) 655-5687.

 

 

 

Living with Autism: A Photo Essay

What’s it like parenting a child with autism?

Every parent has a different experience and a different story to tell. Every parent, whether they have a special needs child or not, faces struggles and triumphs.

Every second, every minute, and every day can be very different. There are some universal experiences we as parents share—whether our children have autism or not—and then there are things that even the most empathetic person can’t understand without having a special needs child.

Sometimes it’s an amazing journey.

Sometimes it’s painfully challenging.

At times it’s incredibly rewarding.

At times it’s a huge struggle.

On most days it’s a healthy variation of all of these and more.

Autism looks completely different in every person on the spectrum. There’s a saying that if you’ve met one person with autism, you’ve met one person with autism.

That said, meet one person with autism: our son Evan. He was diagnosed a month after he turned two. He’s now eight.

These photos of Evan were taken over the course of a single day to show what living with autism looks like for us.

Photo of Evan

Meet Evan

Evan loves to play and be silly. He likes swimming, gymnastics, singing, watching videos on YouTube, and playing video games. He also loves lights bulbs, elevators, the color purple, and curly hair. He hates sirens, spider webs, and when lights are turned off (unless he’s the one turning them off). Like many children with autism, Evan has a hard time with social cues and needs to be taught how to initiate conversations. Without some coaching, every conversation would start with “Do you have spider webs in your basement?” or “What kind of lights do you have at your house?”

Evan with his brother, Noah

Evan with his brother, Noah

Evan and Noah are just 15 months apart. Yes, they annoy each other a lot but they also like to spend time together. Here they are watching TV and unaware of the camera. Evan spent the first half of his life oblivious to those that loved him. Now he’s happiest when he’s with family or friends.

Evan hates sirens

Evan hates sirens

Many individuals on the autism spectrum have sensory processing issues. This means that a person can be extremely sensitive to sights, sounds, smells or textures. Evan hates the sound of sirens and unfortunately he hears them frequently. When he was younger, the sound of a siren (no matter how faint) would send him into an all-out tantrum that took hours to recover from. Now a siren makes him angry and agitated until it stops. Sometimes he’s able to cover his ears until it stops without showing any other negative behaviors.

Every day is different

Every day is different

This afternoon was not a good one for Evan. What causes a meltdown one day doesn’t the next. Today he was really upset about playing in the basement alone. Ironically, as I’m typing, he’s alone downstairs singing Let It Go loud enough for the entire neighborhood to hear.

Evan asleep with a flashlight

Evan sound asleep with his flashlight

Evan is afraid of the moon, but only at night, and can’t explain why. When he sees it during the day, he’s excited he found it. When he’s outside in the evening, Evan insists on walking with his arm covering his eyes so he can’t possibly see the moon. When we ask him, he says it’s too bright at nighttime. Even on the cloudiest of nights, he refuses to put his arm down. Because of his fear he feels safest when he falls asleep with his light on and insists on sleeping with a flashlight.

Evan playing a video game

Evan loves playing electronic games

Evan loves technology. Some of his favorite games include Temple Run and Minecraft. He also likes to watch videos about different kinds of light bulbs on YouTube. Now, he will tell you that he is a lighting expert. It seems like we cannot go anywhere without Evan identifying the fluorescent, incandescent, and CFL light bulbs. To be honest, I still don’t know the difference.

As Autism Awareness month comes to a close, thank you for taking the time to meet one person with autism.

—Jen Lovy, Beaumont Parenting Program Volunteer

Editor’s Note: Subscribe to our blog to read posts throughout April for more resources and about living with autism. You can also search the tag “autism” on our blog. We’d love to hear your story, too.  Share it with us in the comments.