Dealing with the Stigmas Associated with an Autism Spectrum Diagnosis
Last month we touched on the feelings that can come up following an Autism Spectrum diagnosis, and how different cultures deal with them.
This month, we talk about ways to deal with the stigma surrounding ASD. As you may have experienced, people can become nervous, impatient, or even rude when meeting someone with autism.
Below are some ways you can address the stigma with your family, friends, your child’s school, and generally in public.
Explaining Your Child’s Behavior to Your Family
We spoke last month about how some families avoid friends & family because of their child’s behavior.
Should you tell family & friends? Yes, definitely!
Will they understand what an autism spectrum diagnosis means? Maybe not. But that doesn’t mean they will judge you for it.
In fact, they’re more likely to ask you questions. One way is to prepare for this is to print out articles from Autism Speaks, your Regional Center or our Learning Center.
Don’t worry too much about what family & friends will think of you. Once they understand it better, they’re more likely to offer support than judgement.
Below is an excerpt from the book Overcoming Autism, by Lynn Kern Koegel, PhD. and Claire LaZebnik, showing how one couple told family & friends, and the wonderful reaction that followed.
You don’t have to walk up to strangers on the street or anything, but confide in the people who love you. That was one thing we did right: we told our families and our friends right away. First we called them, and then we copied a good comprehensive article someone wrote about autism and annotated it with specifics about Andrew, and we mailed it out to everyone we knew.
None of our good friends pulled away from us because our kid had autism. Just the opposite – our friends and families rallied around us in amazing ways and have continued to cheer Andrew’s progress on year after year. In all honesty, telling people what we were going through only made our lives easier.
Before then, we worried that Andrew’s occasionally aberrant behavior was off-putting. But once he had a formal diagnosis, everyone cut us a lot of slack, and instead of wondering what was wrong with us as parents, most people we knew admitted to a newfound respect for us for dealing with so much.
You will likely need help as your child grows. Tell your family & friends what you’re going through early on. That way, they’ll understand when you do ask for help.
Explaining Your Child’s ASD to Their Siblings
Children without ASD may not understand why their brother or sister receives different treatment. Or appears to “get away with” their bad behavior. To help them, try the following:
- Explain ASD to all of your children. Do so patiently; they may not understand, and may need it explained more than once.Encourage them to ask you questions about the disorder (they will have questions!).
- Have your children focus on how they can help their sibling. Give them a helpful role (e.g., helping their brother with homework). When they behave well, give them plenty of attention.
- When managing behaviors in children with ASD, stay consistent. Make sure everyone involved in your child’s life knows & uses those same strategies.
Explaining ASD to Grandparents
Some grandparents of children with ASD have trouble seeing their grandchild, and their own children (the parents), deal with ASD-related behaviors. They were parents once too…and they often see things different.
- Like your children, explain ASD to the grandparents and encourage them to ask questions.
Reactions may vary, especially considering the different cultural beliefs we discussed last month. But it’s important to educate grandparents about the nature of autism.
If you can, use a specific behavior your parents know about as an example. “Remember when Kim wouldn’t come out from behind the chair? The autism diagnosis explains why she did that.”
- Acknowledge your appreciation of their own parenting skills when raising you. But ask them to respect your right to parent your child, and to understand the differences in parenting typically and non-typically developing children.
- Remind them of the need for consistency in their approach to your child. Children often come to grandparents for learning and reinforcement. If they use the same approaches you do, it helps shape your child’s positive behaviors even more.
NOTE: After the initial conversation about the autism diagnosis, keep your family and friends informed when you learn something important.
Explaining Your Child’s Behavior When in Public
For some children with ASD, even a quick trip to the store can overwhelm them. While some parents can deal with the anxious behavior, many avoid public situations altogether.
If you do go out, you can make your child – and yourself – more comfortable by minimizing the potential for outbursts.
- Give your child headphones so they can shut out the confusing sounds around them.
- Prepare a timetable or map for the trip.For example, “At 4pm we will go shopping, and we are buying cereal and fruit.” A map of shopping aisles will help your child know what to expect. Don’t forget to add going to the checkout, and going home!
- Give your child a task to complete during the trip, using visual symbols to guide them. For example, they could select the bananas and oranges.
Next, prepare a brief explanation for others.
A simple example: “My child has autism. Autism explains why he’s acting this way. He/she’s just trying to make sense of the world around them, like everyone else. Thank you for bearing with us.”
Remember: If someone walks by on the street and gives you a funny look, they’re not judging you by your child’s actions. They’re judging through their own stigmatized view of autism.
An explanation to others in public only takes a moment, and educates everyone around you. Which helps to break the stigma.
You may find that people express sympathy, offer kindness, or are even curious to learn more. If they are curious, send them to AisforApple.com – we’re happy to help them learn about autism!
Working with Your Child’s School
Most teachers will do everything they can to work with your child. In schools, the stigma comes from their classmates.
- Work with the teacher to discuss ASD with all the students.As always, encourage questions about the disorder.If their classmates understand the reasons behind their sometimes odd behavior, it will increase acceptance and limit bullying or taunting.
- Create a buddy system. Ask teachers to find other (perhaps older) children who can each play a game or talk to your child for one lunch a week.
- If your child has trouble during ‘unstructured’ parts of the school day (e.g., lunch or play time), ask teachers to make up a timetable for your child. Maybe they can help out in the lunch room, or stack books.
- Explain the concept or provide a purpose of play time for your child, for example, “At 2pm we will play with a train set for half an hour.”
It is important to explain ASD to children in a way they’ll understand. For example, talk about the fact that many of us have challenges. While one classmate has trouble seeing and needs glasses, another child has trouble in social situations and needs support.
Feedback from Fellow Parents on Their Experiences
We’ve spoken with several A is for Apple parents about the stigmas they felt. Not surprisingly, some have experienced embarrassment and fear. They’re afraid to take their child out in public, because they know it can lead to screaming, crying, or aggression.
When it comes to stigma from family, we did have a recent case where both parents understood their child’s diagnosis. But the child’s Vietnamese grandmother did not. It wasn’t a cultural stigma; she just didn’t think (or didn’t want to think) her grandchild had any problems.
We can all sympathize with confusion and uncertainty, especially for a loved one. It does also illustrate that while the stigma surrounding autism is going away, its presence is still felt.
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Many groups & service providers, including A is for Apple, work to lessen the stigma by educating people about autism. We’re succeeding …and every time you deal with the stigma directly, you help all of us.
If you’re having trouble explaining your child’s diagnosis to family, friends, or their school, please talk with your A is for Apple supervisor.
Next issue we’ll talk about building your “Treatment Team” following diagnosis.
See you next month!
Local Events
Baseball and Bluegrass – Two Events this June!
Tuesday, June 14 is Autism Awareness Night with the SF Giants (via the Autism Society calendar)
The San Francisco Giants are partnering with national and local organizations to raise awareness and funds for ASD non-profits.
- Where: AT&T Park, San Francisco
- When: Tuesday, June 14, 7:15pm
Ticket packages include a long-sleeved shirt featuring Giants legend and autism awareness proponent Will Clark. Visit Autism Awareness Night for more info and tickets!
On Saturday, June 25, your family is invited to “Bluegrass on the Farm” at Costanoa Commons in Santa Cruz for an afternoon of live music and outdoors fun.
- Where: Costanoa Commons is located at 335 Golf Club Drive in Santa Cruz, CA
- When: Saturday, June 25, 1:00-4:00pm
This disability-friendly farm promotes organic farming, community, and a meaningful future. At Costanoa Commons, everyone has a role in life!
Autism Tips: Potty Training II – How to Potty Train
Did you answer “Yes” to most of the questions in last month’s Potty Training article? Then it’s time to begin!
First, a quick assessment of your (the parent’s) readiness. Potty training takes time and commitment. Let’s review what you’ll need to ready yourself.
Parent/Caregiver Readiness
- Awareness of the Process – Although some children learn skills quickly, the process can take several weeks, months, or even years to master. It will get frustrating. Stay persistent and encouraging.
- Time and Cost – Prepare to commit time, patience and money. You’ll need time to review and understand the information needed. Patience, of course, to give your child time to learn. Money for the needed materials, some of which are required, some recommended (like a training seat, training pants, etc.)
- Daily Routines – Prepare to make training a priority for daily routines. You may have to postpone certain activities for a while in order for the child to have regular access to a bathroom. All caregivers, including babysitters and extended family, must be aware of the training routine. Consistency is important for the child.
- Routine/Schedule – If you have a big change coming up (e.g., vacation, moving, new school), wait until the family’s schedule returns to normal to start potty training your child. It helps you and the child focus on the training instead of other things.
Your A is for Apple Supervisor/Clinical Director will help you prepare yourself, and arrange your home in the way you’ll need it for training.
Ecological and Environmental Arrangements
- Wardrobe – Plan to dress your child with clothing that’s easy to remove, or pull up & down. Avoid clothing that your child can’t remove on their own, or clothes that takes several steps to remove.
- Diapers or Underwear? – Children are accustomed to wearing diapers. They may display some maladaptive behaviors when not wearing them. Diapers are there to protect from leaks and discomfort when soiled or wet. However, at this point, your child will need to feel the wetness.
Some parents use washable underwear for training. They’re reusable, and still allow the child to feel the sensation of wetness without dirtying clothes or furniture. Place protective coatings on car seats and strollers to prevent soiling. You’ll find them in many stores and online.
- Preparing the Bathroom – Make sure your bathroom is arranged for success! Have all training materials at your fingertips. Remove anything that may cause distractions, like books, magazines, and toys which aren’t part of the training.
- Potty Chairs or Seat Training – There are two types of training urinals. Choosing the right one depends on your child’s age and skills. For small children, a single “potty chair” lets the child sit independently without needing to use a stool. Schools have small bathrooms for children to help make using the potty easy.
Once your child gets older and has better balance skills, they can start using a regular size bathroom with seat training.
Materials Needed for Potty Training
To get started with potty training, you’ll need the following:
Water or preferred liquids (tea, juice, etc.)
- Reinforcers identified in the Preference Assessment
- Snacks (such as crackers, pretzels, or nuts to increase thirst) that aren’t their favorite, but that the child will eat when presented
- Extra pairs of loose training shorts or pants, 1-2 sizes bigger than they usually wear
- Gloves, paper towels, and wipes for cleanup
- A small foot stool or a thick book (for your child to rest their feet on)
- Blank copy of the Toileting Data Sheet, timer, and a pencil/pen
Next month we’ll discuss the toilet training “intervention,” and the Azrin and Foxx method of potty training. Please join us on our Facebook Page with your questions or stories: https://www.facebook.com/AisforAppleInc/
Ask the A is for Apple Community
Summer Travel Tips from A is for Apple Parents & Caregivers
Last month we sent an email around to all of you, asking the question:
“What are your tricks and tips for making travel less stressful and more fun for your family?”
Here are the results, direct from our parents & caregivers! If you plan to travel as a family this summer, keep these helpful travel tips in mind.
- If you’re flying, call the airline ahead of time & tell them your child has special needs. They’ll work with you. (We mentioned this in our November 2015 article on holiday travel, but it applies year-round.)
- Don’t go places with lots of people. It could make your child upset or scared. Disneyland may not work, but forests or big parks would.
- Look for destinations with sensory activities you know your child enjoys. Do they love water? Like playing in the sand? Take them to a beach! What if they don’t like the texture of sand? You can book a hotel with a pool!
- Bring your own food. That way you don’t need to go to restaurants too often when traveling. (See our Daily Routines article on eating out for more help.)
- Bring items to help your child stay calm. Headphones, hats, sunglasses, those sorts of things.
For those of you who responded, thank you!
If you’re looking for travel ideas, the Family Resource Center at San Mateo County Gatepath has published a 2016 Summer Camps and Activity Guide (PDF).