At CANDO, we are acutely aware that unexpected changes require thoughtful support for persons with ASD or NDD. We have put together a list of resources to help with explaining COVID-19, ideas for creating supportive schedules for the day, and various activities to support positive interactions and successful engagement, including indoor movement activities! Please note that it is important to consider the youth’s developmental level when applying these strategies.
Autistic people should be treated fairly at the doctor’s office. As an autistic adult myself, I’ve been treated well by some doctors and badly by others. Here are some tips for doctors, nurses, and other medical workers who work with autistic adults.
I’m an adult and should be treated like one. That means taking me seriously when I tell you how I’m feeling or what I need.
Sometimes the world around us can be really overwhelming. Things can be too noisy, too bright, or too rough.
Autistic people don’t all look or sound the same. We can be of any race, gender, age, or background.
Many autistic people like to be called autistic people, including me. That’s because we see it as an important part of ourselves. Don’t call me a “person with autism.” If you’d like to learn more, you can read this article about autism and language by Kate Ryan.
Some people can’t speak, but they can still talk to you in other ways. These ways include computers, tablets, letter boards, and other kinds of assistive technology. I do speak myself, but I know people who don’t.
You may need to break things down to make them more understandable. I don’t have a hard time with medical language, but some people do.
Autistic people still care about others, even though it may be hard for them to show it. There’s a difference between feeling something and being able to express it.
Hello, my name is Felisha Thomas and I work as a behavior therapist in a public school.
Therapists and teachers use ABA to help work with children. ABA stands for Applied Behavioral Analyst. This means the science of behavior. ABA is not just for children with autism. ABA is used to help all children with their behaviors.
Therapists and teachers learn ABA in school. They learn about the 3 ABCs of behavior.
Antecedent: what are they doing before the behavior?
Behavior: what are they doing?
Consequence: what are they doing after the behavior?
Therapists and teachers use ABA for lots of things.
Help children make better choices throughout the day.
Help children who are sad.
Help children who are mad.
Play with children at the playground.
Keep children safe.
Help children follow directions in class.
Help teach children the rules.
Help children learn the class lessons.
Therapists and teachers go other places outside of school to help children too.
We go to museums.
We go to zoos.
We go to parks.
We go to the pool.
We try to help children anytime there is a need.
Therapists and teachers are friendly. We let children know that we are their friends who like to help.
I am a developmental-behavioral pediatrician in training. I am often asked to see children for concern about autism spectrum disorder (ASD). During my visit, I watch how children behave. I then decide if ASD is the diagnosis that best fits their behavior. I see children of all ages. This is about children less than age 3.
Why Toddlers are Different
Children with ASD tend to respond better to treatment when they are diagnosed early. (National Research Counsel, 2001). Many children can be diagnosed as young as 18 months of age. But most children are diagnosed between 3-4 years of age (Filipek, 1999).
One reason is because the early symptoms are hard to see. Some of the best-known symptoms may not show up until a child is older. These include flapping their hands and repeating parts of TV shows.
Toddlers with ASD often don’t learn the skills they need to interact with others. Children who are behind in just their ability to use language still try to interact. They will often use eye contact and gestures to work around their struggles. Children with ASD have trouble with this.
Here are some free websites and videos to help anyone who cares for young children. This information shows what we call the “red flag signs” for ASD.
not sharing their interests with the ones they love;
not making eye contact; and/or
not using gestures to let people know what they want.
There are other resources on this website. However, not all of them are free.
How a Toddler with ASD Might Look
Here are some videos from the Centers for Disease Control (CDC) showing how a toddler with autism spectrum might look. There are also toddlers that do not have the warning signs of autism. This enables you to see how they differ. All the videos are on the CDC video library. Some of the videos are linked below.
Looking at someone when their name is called
Here is a video of a 12-month-old who responds to his name by looking at his mother and smiling. He also points at her. This is what we expect a toddler to do when their name is called.
Parents and early-childhood workers interact with young children the most. They often are the first to know something is wrong. They can be important to get a child with ASD the help they need. These links and videos can help anyone who is interested better know the warning signs for ASD.
Filipek, P. e. (1999). The screening and diagnosis of autism spectrum disorders. Journal of Autism and Developmental Disorders, 439-484.
National Research Counsel. (2001). Educating children with autism. Washington, DC: National Academy Press.
As of 2012, autism can be found in 1 in 68 children. 1 It was noticed that boys are more diagnosed than girls (1 girl to every 4-5 boys). 1 Is autism really more common in boys than girls? Or are we missing autism in girls?
Autism in girls can be hard to see. Girls with problems dealing with people can be seen as shy. They may live for years without knowing they have autism. This delays diagnosis and treatment. Boys are noted earlier than girls by 2 years.
Most of the time, a child with autism has problems dealing with people, and has repetitive behavior. Girls are aware of these problems but they are good at hiding them. Girls with autism want to deal with people, but don’t know how. They may start copying what others do. ‘They pretend to be normal’. 2Girls with autism get tired from copying. “It is like math all the time”.2
Unlike boys, girls don’t flap their hands or jump all the time. They may not play with wheels of cars or trucks.These are other reasons for the delay in diagnosis.
Some teen girls love numbers and focus on their weight. They start counting every food they eat. This may end up having an eating problem. An eating problem may be a ‘face’ of autism in girls. Girls with an eating problem and girls with autism have similarities. They are both rigid, love details, and hate changes. Some children with autism are picky eaters with a strict diet.
Autistics can’t read between lines. Girls miss that someone is creepy. They are more at risk for abuse and taken advantage of.
Girls with autism want to make friends. They play with regular toys (dolls or Barbie). They have fewer behavioral problems. They have fewerrepetitive moves. They are more at risk for feeling down or worried. They are more at risk forabuse
Girl with autism will need special help. Girls benefit from social groups that teach them how to:
Hey, my name is Sara. I’m Autistic. I have other Disabilities too. I like to say a laundry list of them. I’m going to talk about Autism and grad school here. And why I’m going. And how long it took me to get a regular college degree, and why.
I’m scared. I feel like graduate school will be a next level to regular college. I have trouble with organization. I have trouble with time management. Depression makes me tired and low energy.
I have already been talked to about going off topic in class in the first week. It wasn’t really off topic. The rest of the class and the teacher can’t see the patterns I see and how all of it was connected. I think another Autistic would have. The teacher was nice about it.
A classmate talked to me too. I thought she was being nice, then I wasn’t sure. I took it as I heard it, and then I started to wonder. Was it about my ‘lack of social cues’ or about their lack of comfort? The thing about Autism is I can’t know which it is. If I asked, would people tell me the truth or not? Thinking about this kind of tiny little social lie makes me crazy. It feels like betrayal to tell them. But people do it all the time. I can’t tell them or know when to tell them or when not to. Wouldn’t it be better if we all just didn’t? How is it polite? Makes me feel even more apart.
When I get in to school early, I take time to separate off and play simple games on the iPad or iPod to relax my mind and be less affected by lights and sound. So I can have enough energy reserved for getting through classes.
The next week, I got things said to me I’ve heard before, but are never easy to hear and are never cool. I hate hearing them. They make me feel not.
Not Autistic enough.
Not Disabled enough.
I don’t need help.
I don’t need support.
Not as much as others, so it doesn’t
Life isn’t a competition. It hurts even more because my mother always compared my and my brother’s levels and types of Disabilities. If you don’t ‘look Disabled’ or ‘act Disabled’ then you always seem to get doubted, and people get mad at you. Like there’s a pot of Disability to reach into and smear across your face.
I wish my child was able to do all you can.
You need to understand not everyone is like you.
My child is so much more
My child is much lower
If my children could just sit there, their lives would be amazing.
Way to suck the worth from my life. I am not here to be compared to. I am a person all on my own. This needs to be. I need to be. I am made less human if not. I wrote a poem about all this.
I try to remember when my son began to lose words. It seemed like I always knew how to reach him. I mean, yes, he had tantrums. He was a baby; you know? Besides, he was a boy, aren’t boys a little slower to develop? And his older brothers are quiet…we all are.
When my sister-in-law approached me about his development, I was stunned. Of course he talks. He talks all the time. At least that is what I heard myself say. Didn’t he? The more attention I began to pay, the fewer “I love yous” I heard. I know he used to call me Mommy. When did he begin to just stare out into… nothing? Joshua was moving backward, regressing. A well-check visit with his doctor sent my world into a tailspin. Just one word: Autism. That was almost seventeen years ago.
I have worked as a behavior therapist for nearly three years now. In that time, I can count the number of African American children I have serviced on one hand. That is not to say that autism does not affect African American children. It is just to say that I serve a larger population of non-African American clients. As a mother of an African American young man diagnosed with autism, this is concerning. Why are we not seeing more African American families seeking therapy? Is it because of barriers to quality medical care? Is it because of lack of financial resources? Or could it be cultural beliefs? Statistics bear out one fact…African American children are being diagnosed later than their counterparts.
National statistics state that Autism Spectrum Disorder (ASD) affects 1 in 68 children today. This diagnosis affects boys nearly five times as often as girls. It is not determined by race. It is not determined by where you live. It is not determined by how much money you make. It is an equal opportunity disorder being diagnosed across these factors. However, when you get diagnosed is a factor that can have a profound impact on a child’s development. Early diagnosis and therapies to support language, communication, and social-skill development are important. These have been shown to strengthen speech, relationship building, and interaction with others in a meaningful way.
African American children statistically are diagnosed later than their counterparts. Because of this, they often miss opportunities for early intervention. The failure to access services during early childhood can require more intensive and extended therapies later in life.
Statistics show African American families often have fewer resources. These could be financial, access to care, or social supports. Education about this diagnosis can be a powerful tool in closing the diagnostic gap. Recognizing early signs of autism can help parents identify possible red flags. The Centers for Disease Control “Know the Signs Act Early” campaign provides important information. Their brochures highlight developmental milestones as well as developmental delays to watch from birth to age five.
Below are some red flags from the CDC that parents should know. For more information, visit “Facts About ASD” on the Centers for Disease Control web site.
Some signs about children with ASD include the following.
They may not point at objects they are interested in. (for example, not point at an airplane flying over).
They may not look when you point at objects.
They may show no interest in others.
They may not look at you when you speak.
They may like to be alone instead of with others.
They may have a hard time understanding emotions. (for example; sad, happy, scared, angry, etc.)
They may have a hard time saying what they feel. (for example; they are sad, happy, scared, angry, etc.)
They may not like being hugged.
They may look as if they are not paying attention when people talk to them.
They may have a hard time talking to others.
They may have a hard time playing with others.
They may say the same thing over and over.
They may have a hard time letting others know what they need.
They may not play “pretend” games. (for example, not pretend to “feed” a doll)
They may do the same thing over, and over again
They may need to have things done the same way every time.
They may have a hard time when things change.
They may act unusual to the way things smell, taste, look, feel, or sound.
They may stop doing things they once did. (for example, stop talking, playing with others, etc.)
Source: Centers for Disease Control and Prevention, 2016 – See footnote.
The information above does not address potential factors for diagnostic disparities suffered by African Americans. It can, however, bring awareness of potential signs of autism. This awareness can help families bring concerns to their pediatrician’s attention. Knowledge is power. Early detection and intervention can make a significant difference.
Today, my son is preparing for adulthood. We are working on vocational training with hopes of transitioning to college with educational supports. Is his story typical? Who knows? But shouldn’t it be?
I work with families who have young children with autism spectrum disorder (ASD). Parents interface with Early Intervention, public schools, and pediatrics. For a person with autism, age 22 marks the end of many childhood services. But autism doesn’t go away at age 22. One transition is the switch from child doctor to adult doctor. This can be a difficult task. Adult doctors often have little training in ASD. As a result, they may not be familiar with autism-related issues.
ASD service systems reflect the idea that it is a childhood disorder. Yet autism is lifelong. The rate of autism diagnosis is increasing. Children with ASD grow up to become adults with ASD. Our service systems need to catch up. We need to advocate for systems that better serve people throughout their lives. This includes better training for adult doctors. Recent studies show that adult doctors don’t have enough autism knowledge. The good news is that they seem interested in learning.1
Whyis this important?:
Some health conditions maybe related to autism, or they may not It is important for the doctor to know the difference.
People with autism may require unique needs for doctor’s visits.
Primary care doctors should be familiar with ASD services. This way, they can make referrals as needed.
Primary care doctors need to look at the big picture to provide good care. This includes things like housing, social life, family, and job. The doctor needs to understand how ASD impacts a person’s life.
A good primary care doctor can be an important advocate. He or she can help a patient access services.
How to find an adult doctor who understands autism:
At age fourteen, my son had begun to express a desire to show his individuality. It is something that most teenagers go through. Suddenly, they want to pick out their own clothes. They want to try new hairstyles.They want to explore their own individual taste in music. In short, they want to try all things cringe-worthy to parents. My son is autistic. Up until that point, he had shown very little interest in things most preteens and teens do. He wasn’t into the current fashions other than what I bought. He wasn’t into confusing adults with slang. He wasn’t into blasting Richter scale registering music. So, when he asked me to take him shopping, I was excited and somewhat scared. He was becoming… a typical teenager. This was something I had not thought would happen. Not because I did not believe he would grow up and become a teenager, I did. But because looking at him through a lens of autism, I was not sure what to expect. I could not read his social cues; I did not know what would be next. I did not know whether he would continue to show delays in certain areas. I did not know if he would suddenly show interests that were not there before. That may sound simple, but trust me, it’s not. Like a lot of parents, I stood ever alert. I was the self-professed playground police. I was the guard always at the ready to protect him from the world. I squared my shoulders, grabbed my purse and keys, slid on my sunglasses, and said…let’s bounce!
Into Uncharted Territories
My son, Joshua, had always avoided the mall as if it were a punishment. I often wondered if this were a boy thing or an autism thing. With Josh, it was probably more of an “I don’t want to follow mom through endless stores” thing. I admit, I was a true mall warrior and had shopped with the best of them. But shopping with Joshua was different. He would lag behind no matter how often I prompted him to keep up. He seemed to have a hard time trying to walk beside me. Forget about him trying to focus on my witty banter. After finding that I was talking to thin air for the fifth time, I stopped dead. Frustrated, I looked back to yell for him to catch up. That’s when I saw that he was tracking my footsteps with his eyes.
Anticipating my movement by social cues was hard for him. He had a hard time understanding that I would stop unexpectedly to ooh and aah over a sweater in a store window. He couldn’t understand that my deep exhale was a signal of impatience towards teenagers stopping directly in front of us to talk. He couldn’t follow these social cues. He was too busy watching my feet so that
he could move with certainty through the crowded mall full of holiday shoppers. I stopped in front of what I thought was an age appropriate clothing store for him. I knew I would never fit into any of these styles again. As we went inside, I watched my son suddenly come to life. He circled the racks of clothes like a prize fighter. I held up a camouflage pair of pants. Wait, was that a smirk? I held my breath and reached for a pair of cargo pants. “Mom those are skinny jeans” he responded. Now that was almost with an attitude! Oh happy day. Was he acting like…hell, like I did at fourteen shopping with my mom? I approached who I thought must be the store manager. I owned shoes older than this kid.
A Mother’s Fear….
“Tell me, are there any colors that my son should not wear?” I asked. I was trying to look cool and confident. “Excuse me?” he answered, looking confused and bored. How do they do that? I repeated my question. “Are there any colors my son should not wear?” His gaze followed mine to the front of the store where my son stood. He was examining a pair of bandana-printed sweatpants as if he would be quizzed on them later. “My son has autism. He wants to shop for himself. I need to know if there are any colors he should not wear. Gang related colors?” The manager smiled. He suddenly looked old enough to buy a beer. “That’s a good question” he replied. We spent the next few minutes discussing this. He explained that, where we lived, gangs were identified by sports teams, not colors. He ran them down to me by pointing out baseball caps hanging behind the register. I made mental notes. My son bought a pair of sweat pants and a sweat shirt. They matched. He paid with his own money at the register from his own wallet. As we exited the store, I asked if he wanted to visit the food court.
“I’m good” he replied. That day my son joined the ranks of “teenagedom” while I continued to protect him from the sidelines. It was a good day.
Understanding the Dangers of the Unfamiliar Paths
Individuals with autism may have difficulties understanding social cues in their environment. This inability could place them at risk. Wandering; victimization from others; as well as having their movements or interactions misunderstood; are real dangers for those diagnosed on the spectrum. Autistics, parents, and caregivers need tools to help protect them when they are in the community. Autism Speaks offers several tools to help gain insight into societal dangers. They provide suggestions on how a community can help to safeguard their loved ones. While my concerns may not be shared by everyone, for me they are real. Pretending not to see the elephant in the room does not make it go away.
range from cell phone use, avoiding victimization, and asking for help, to interactions with law enforcement. You may need to practice these plans many times with your loved one. Knowing what can possibly happen and being able to anticipate it is power. Safety is being prepared, not dealing with the aftermath. Remember, like fashion, nothing is usually one size fits all. But can we afford to not try it on?