Autism. Seeing or hearing this word can impact people in so many different ways. For some, it’s an everyday word. It may remind parents of their child and light up their face. Or it may be a word that describes who they are as a person. For others, it might remind them of their child’s struggles and bring anxiety. For many families, it’s a feared word because they aren’t sure what it might mean for their child. Many parents may wish to know more about Autism and some may avoid the topic all together. It’s definitely an emotionally charged word for many – and this is okay. For me, this is a word I am passionate about. Children on the Autism Spectrum make me happy, they challenge me, they make me laugh, they can frustrate me, they motivate me to be a better speech language pathologist, they bring so much joy into my life, and are my absolute favorite children to work with!
Most people have heard of Autism Spectrum Disorder (ASD) and many have heard the most common signs and can probably share some facts about Autism. This really is great because it means knowledge is increasing! In spite of this, there is still so much that is misunderstood about Autism. This is why April is not just about increasing awareness and learning more about Autism, but more importantly, increasing acceptance for those that are neurodiverse and have brains that are simply wired differently than others.
One of the main reasons Autism is misunderstood is because it is often thought of as this major visible difference. People expect those on the spectrum to look differently or behave differently, or act in ways that could be considered “stereotypical” for ASD. And while some people on the spectrum do, this just isn’t true for everyone. This thought process is likely due to the fact that we often hear about children who are on extreme ends of the spectrum. These are the children with cognitive delays or who are significantly impacted by their autism, unable to speak, avoidant of other people, and frequently engage in what is viewed as unusual behavior. We also hear about kids that are geniuses and have amazing savant skills. While both of these are examples of what people on the Autism Spectrum may look like, the truth is, the majority of individuals fall somewhere in the middle. When talking about ASD, remember that no two people will present the same, and in fact, could appear and behave very different from one another. Additionally, a person’s characteristics will change over time, and as a child gets older it is expected that their differences be displayed in alternative ways, some of which will appear more typical.
So what exactly is Autism? Autism is a neurodevelopmental disability that is characterized by differences in the development of language and social communication combined with repetitive behaviors and/or restricted interests. It is important to note a diagnosis involves a combination of these characteristics, and differences, although they could be subtle, would need to be present in all three key areas. Let’s break these areas down to get an idea just how these differences might present, but please note that one would not need to have all or even most characteristics in each area, these are just some common examples for how Autism can present in different individuals.
Differences in Language:
While not necessarily a requirement for an autism diagnosis, a first clue to a child being on the spectrum is often a delayed onset of talking. It is also common for kids to initially begin talking and then lose words or skills around 18-24 months. Some children may have advanced language skills and even use unexpected vocabulary words. A child may repeat what you say exactly the way you say it, which is called echolalia. They may repeat things they hear on tv, and some parents describe this as talking like a “parrot”. Some kids may speak in gibberish, also called jargon, and may combine nonwords with real words. Children may struggle with pronouns (I, you, he, she) or prepositions (on, under, off). Often those on the spectrum may speak in an unusual pitch or tone, sing-song voice, or have an atypical quality to their voice. Many children on the spectrum will develop what are known as splinter skills in their language. This may present as the child who knows all of their letters, numbers, shapes, colors, names of construction vehicles/dinosaurs, or can label many pictures or items around them, but struggles communicating their wants and needs, or combining words for everyday functional communication. Making requests can be particularly difficult, and it may be that children will point, whine, or cry rather than say words that they already know. Some kids will use language in a repetitive manner; such as saying exclamations like “Oh no! Oh dear!” frequently and with the same tone each time. Additionally, decreased pointing and gesture use can be a characteristic of Autism. A child who uses others’ hands to do things like turn pages in a book or activitate toys, or pulling parents towards a desired item in order to get help is also common for younger children on the spectrum.
Differences in Socialization:
First, it is a common misconception that Autism means anti-social, but this is usually not the case! Many children may want to interact with other kids, but just do not know how to start interactions or continue them appropriately. Other kids may prefer to play alone. Additionally, some kids struggle initiating interactions in general, or may primarily do this when they want something, need help, or have a highly motivating item. While many children with Autism, particularly girls, may frequently hold out items to show others, decreased showing and sharing of items is also a common characteristic. Most people on the spectrum will have decreased eye contact. That does not mean that they never make eye contact, but it is less than would be expected, not always combined with words, or not used at times it would be expected (such as when requesting). Some kids do not consistently respond to their name, or parents describe them as having “selective hearing”. Many children do not make many changes in their facial expressions. Some kids struggle recognizing others’ facial expressions or demonstrating an understanding of a range of emotions. For older and more verbal children, most have difficulty participating in reciprocal conversations. These children often rely on someone asking questions to continue conversation and may have decreased sharing about their experiences or asking about others’ experiences. Often more verbal individuals with ASD have preferred topics that they will bring up frequently in conversation, and the quality of their conversations may improve when it is a topic of their choosing.
Repetitive Behaviors and Restricted Interests:
Most people have heard hand flapping and toe walking are a sign of Autism. This is true, but what is less known is that there can be many other atypical movement mannerisms. This can include tensing one’s hands, face, or body, making unusual finger postures, or frequent jumping, spinning, or rocking of the body, which is called stimming. Some children might be so interested in a topic that they learn all kinds of amazing facts or take items apart to learn how they work. Kids may play with a few toys to the exclusion of others, such as vehicles, trains, dinosaurs, numbers, letters, etc. Some children lack functional and/or creative play. Children may play in a very similar way each time or set up play scenarios without playing creatively. They may line items up in a row or enjoy organizing toys rather than playing with them. Some children may struggle with changes in their routine, insist on things happening the same way, or be unable to tolerate having activities interrupted before they are completed. Many children with Autism have strong memories, and can remember facts and details that may be surprising to others.
Sensory differences can also fall under this category. Common sensory differences include having a high tolerance for pain, being sensitive to loud sounds, smelling items other than food, enjoy running and crashing into items, liking to be squeezed tightly, or avoiding being squeezed. Many children dislike having their hair cut, brushed/washed, or their nails being trimmed. Also, most are picky eaters and have a difficult time trying new foods. They may be sensitive to having their hands dirty or particular about their clothing.
Many people think that behavioral difficulties are a part of Autism, and while it is common for children on the spectrum to have tantrums or meltdowns, it is necessary to note that this is not a part of the diagnostic criteria. These behaviors are often secondary to the characteristics listed above. For example, a child who cannot communicate will likely cry as a form of communication. A child who is rigid and struggles with unexpected changes or becomes upset when they perceive things to be “out of order” is easily overwhelmed when these things happen and may tantrum as a result. Additionally, a child with sensory sensitivities is likely to be easily overloaded. And this is where the acceptance comes in- if you see a child or parent struggling, please do not assume the child is spoiled or acting out on purpose, and instead offer support.
It is critical for the community to know these differences may not be easily observable to parents, teachers, therapists, or physicians. This is often due to people knowing the stereotypes of autism, or thinking of the characteristics in a black and white or yes and no manner. There’s no magical checklist that one can go down and check off behaviors (responds to name- check, makes eye contact- check, points- check) to diagnose or rule out autism, and in fact, it’s fairly common for a child who has autism to do all three of those things. Instead, one would need to look at the quality and quantity of the child’s interactions, which can include not demonstrating skills consistently across people, settings, topics, or activities.
If after reading this article, you have concerns in two or more areas listed above, it is recommended that you seek an evaluation to determine the presence of or rule out Autism. It is my experience as an evaluator that parents and physicians are better at identifying the differences in language and sensory, and either struggle recognizing differences in socialization and repetitive behaviors, or feel like some differences are typical for a child’s age. It is possible that your concerns may be dismissed by others, and this can often delay children getting the help they need. So it’s really important to trust your gut and seek help if you have any concerns.
Assessments and getting a diagnosis can be scary, but it’s key for parents to remember that no matter what, your child is the same exact person with the same strengths and weaknesses as they were the day before you received the diagnosis. You may have a new word in your vocabulary that helps describe and help your child, and being armed with this information can really make a huge difference for your family.
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