Criticism Of Functioning Labels
Many autistic rights activists disagree with the categorisation of individuals into “high-functioning autism” and “low-functioning autism”, stating that the “low-functioning” label causes people to put low expectations on a child and view them as lesser. Furthermore, critics of functioning labels state that an individual’s functioning can fluctuate from day to day, and categories do not take this into consideration.
Sensory Concerns For Moderate To Severe Autism
Sensitivity to textures, tastes, sights, sounds, and aromas can be a challenge for children with moderate autism.
When faced with overwhelming sensory input, they may meltdown and display behaviors like rocking, moaning, or aggression. Parents must know their childs sensory concerns and take steps to create a non-threatening environment with limitations on sensory triggers. They can turn down the lights, serve preferred foods, and reduce household noise.
Additionally, they can use behavior therapy and other strategies to help their child develop coping skills and become more comfortable in less-than-ideal environments.
Because of sensory concerns, children with severe autism must often live in a very structured and predictable environment. They may be unable to tolerate loud noises, certain aromas, or any touching.
To prevent meltdowns or self-injurious behavior, parents must create a non-threatening environment and limit their childs exposure to sensory triggers. In cases, therapy can help children with severe autism manage sensory concerns to a degree over time.
Level 3: Requiring Very Substantial Support
Level 3 is the most severe form of autism. Children in this category will manifest many of the same behaviors as those with levels 1 and 2, but to a more extreme degree.
Problems expressing themselves both verbally and nonverbally can make it very hard to function, interact socially, and deal with a change in focus or location. Engaging in repetitive behaviors is another symptom of level 3 ASD.
A person with ASD level 3 will have a very limited ability to speak intelligibly and will rarely initiate interactions. When they do initiate an interaction, they will do so awkwardly. Someone with level 3 will also respond only to very direct social approaches from other people.
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What Autism Can Look Like
While more information than ever is available about autism, there are still prevalent stereotypes: The Rain Man stereotype of the severely impacted person with savant skills, and the less severely impacted Bill Gates stereotype, a scientifically or mathematically brilliant person with limited social skills.
Stereotypes, by definition, are oversimplifications, which means that many layers and nuances are frequently missed.
Autism expert Dr. Stephen Shore, who is on the autism spectrum himself, says, Once youve met one person with autism, youve met one person with autism. In other words, the elements that make up autism can be and are differently combined in every person on the spectrum. Heres a great video that demonstrates what this means:
My son was diagnosed on the autism spectrum in first grade. Hes now in sixth grade, and we have worked with his school over the years to support him and his teachers in understanding what autism can look like in him.
Most students with autism will exhibit behaviors that dont look like autism stereotypes and, instead, might look like misbehavior. But they are still autism behaviors. Below are kinds of behaviors which our son experienced in his classrooms and how we worked with his teachers to manage them.
Intermittent Mutism
As each childs response may be different, the best thing a teacher can do is talk with the childs special education teacher and speech therapist to know how to best respond when this occurs.
Task Avoidance
Understanding Autism Spectrum Disorders
Autism is not a single disorder, but a spectrum of closely related disorders with a shared core of symptoms. Every individual on the autism spectrum has problems to some degree with social interaction, empathy, communication, and flexible behavior. But the level of disability and the combination of symptoms varies tremendously from person to person. In fact, two kids with the same diagnosis may look very different when it comes to their behaviors and abilities.
If youre a parent dealing with a child on the autism spectrum, you may hear many different terms including high-functioning autism, atypical autism, autism spectrum disorder, and pervasive developmental disorder. These terms can be confusing, not only because there are so many, but because doctors, therapists, and other parents may use them in dissimilar ways.
But no matter what doctors, teachers, and other specialists call the autism spectrum disorder, its your childs unique needs that are truly important. No diagnostic label can tell you exactly what challenges your child will have. Finding treatment that addresses your childs needs, rather than focusing on what to call the problem, is the most helpful thing you can do. You dont need a diagnosis to start getting help for your childs symptoms.
Whats in a name?
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Other Signs Of Autism
You may also have other signs, like:
- not understanding social “rules”, such as not talking over people
- avoiding eye contact
- getting too close to other people, or getting very upset if someone touches or gets too close to you
- noticing small details, patterns, smells or sounds that others do not
- having a very keen interest in certain subjects or activities
- liking to plan things carefully before doing them
Getting An Autism Spectrum Disorder Diagnosis
The road to an ASD diagnosis can be difficult and time-consuming. In fact, it is often two to three years after the first symptoms of ASD are noticed before an official diagnosis is made. This is due in large part to concerns about labeling or incorrectly diagnosing the child. However, an ASD diagnosis can also be delayed if the doctor doesnt take a parents concerns seriously or if the family isnt referred to health care professionals who specialize in developmental disorders.
If youre worried that your child has ASD, its important to seek out a clinical diagnosis. But dont wait for that diagnosis to get your child into treatment. Early intervention during the preschool years will improve your childs chances for overcoming their developmental delays. So look into treatment options and try not to worry if youre still waiting on a definitive diagnosis. Putting a potential label on your kids problem is far less important than treating the symptoms.
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Explaining Autism To Your Family And Friends
After receiving your childs autism diagnosis, youll likely have new questions every day. One thing that most parents struggle with at first is how to explain autism to their friends and family. Being honest about your childs diagnosis and how it affects him/her is important. The more you educate people in your childs life, the more successful interactions will be.
Give people concrete ideas on how to support your child and interact with him/her. Explain to family and friends how autism affects your child. Give specific examples and explain your childs reactions. To the extent that you are comfortable, provide comprehensive answers to their questions.
People will likely have lots of questions. It is okay to tell people you are still figuring things out. It is fine to say that you do not have all the answers and refer them to a helpful article. These conversations are ongoing ones. Each time you start a new conversation, it will likely get easier.
Why Are Rates Of Anxiety Higher In People With Autism
Although the research above has shown that anxiety is more common in people with autism, researchers are still exploring why this is the case. Each individual may experience the overlap between anxiety and autism differently depending on their personal combination of symptoms and skills.;
In the webinar Anxiety, Autism: Five Prime Suspects, Christopher Lynch, Ph.D., explores five ways that anxiety and autism may interact.;
Other possible explanations for the overlap between autism and anxiety include:;
- Genetic factors. Anxiety and autism may have a shared genetic origin that researchers have yet to identify.;
- Insufficient support. People with ASD may face challenges and have comorbidities that require additional support and resources. Worrying about, or being unable to access these resources, can increase anxiety.
- Social pressures. The stress of living in a world that expects individuals to act or interact in ways that dont feel natural to them may intensify anxiety.
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Keeping Your Child With Autism Safe
One of the things that worries autism parents most is keeping their child safe. There are so many obstacles and issues that parents of typical children dont even have to consider. Autism symptoms like self-harm, head-banging, wandering, eloping, hiding, and running are just a few things that are far more prevalent in autistic kids. Safety proofing your home and childs surroundings is imperative.
Kids with autism are often less aware of safety concerns. Many low functioning children with autism have no idea that something is dangerous and are unable to understand the implications of their actions. When they get overwhelmed and triggered, they can run into the street without even noticing the cars coming. According to the National Autism Association, Autism itself does not affect life expectancy, however, research has shown that the mortality risk among individuals with autism is twice as high as the general population, in large part due to drowning and other accidents.
A recent study revealed that over 50% of children with autism wander or elope. Several parents report that despite extreme safety precautions being in place, their child has found a way to escape from their home or school. This issue is amplified when your autistic child is nonverbal . Simple things like going to school, riding a school bus, going to the mall, and playing in the park require extreme care and cause parents a tremendous amount of stress and worry.
How Can I Help A Friend With Autism
People with ASD have a very wide array of signs and symptoms. Some people with ASD do not feel that they have a disorder and don’t want to change. They’re proud of who they are and they want to be accepted, even though they may have different strengths and weaknesses than most other people.
All people deserve respect. But people with ASD may be teased, bullied, or left out because they’re different. Bullying and teasing are never the right way to treat other people, but it may be hard to be a friend with someone who has ASD.
People with ASD often don’t understand playful jokes or sarcasm. You may need to be very clear and factual when you communicate with someone who has ASD.
Try to be patient and kind. Remember how hard it might be for the person with ASD to understand how to be a friend. Stand up for classmates who are bullied. Tell adults, so they can help protect kids who are bullied.
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The Need For A Label May Limit Our Search For Understanding And Healing
Posted August 30, 2015
The subject of autism is so highly fraught, a well-respected child development researcher told me, that she might need to be the only one in her field to never address the issue. A recent study showing that the likelihood of a child receiving a diagnosis depends on the center conducting the evaluation highlights the complexity of the problem.
For his PhD thesis, Phech Colatat at MIT Sloan School of Business Management reviewed records from three clinics established specifically for autism spectrum diagnosis. At two centers the rate was around 35% while at a third the rate was 65%. The MIT news release about the study states:
Those rates persisted over time, even when Colatat filtered for race, environmental factors, and parents education.
But then comes what may be the most interesting finding:
..when doctors moved from one clinic to another, their rates of diagnosis immediately changed to match that of the clinic as a whole.
Colotat, based on extensive interviews and observations within the clinics, develops a theory for this phenomenon: imprinting. The article continues:
Most striking about this study is the subjective nature of the diagnostic process. Once the purpose of the evaluation is to answer the question, “Does he or does he not have autism?” the possibility of exploration of the complexity of a child’s experience is already limited.
Level 1: Requiring Support
Level 1 ASD is the mildest, or the most “high-functioning,” form of autism. Children with level 1 ASD have a hard time communicating appropriately with others. For example, they may not say the right thing at the right time or be able to read social cues and body language.
A person with ASD level 1 usually is able to speak in full sentences and communicate, but has trouble engaging in back-and-forth conversation with others. They may try to make friends, but not be very successful.
They may also be inflexible in certain ways and have trouble moving from one activity to another. Additionally, they may have problems with organization and planning that prevent them from being as independent as expected for their age.
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Why This Terminology Is No Longer Used By Doctors
The spectrum illustrates a broad range of developmental delays and symptom severity.
ASD includes people who have a few mild autistic traits to those who need help with day-to-day functioning. It represents every intelligence level, as well as varying degrees of communication and social abilities.
The differences between one type and another type can be subtle and difficult to determine.
When Should I Have My Child Screened For Autism
If you notice two or more of these signs in your child, it is time to have him/her screened. Not meeting typical developmental benchmarks is also an indicator to screen. A multi-disciplinary team will help you with a diagnosis for your child. The process starts with a questionnaire to determine how your child functions. It will ask about your childs behavior at home, school, and social settings. The evaluation might ask for your childs pediatrician and teachers input.
If the pediatrician suspects ASD, your child will meet with a team to further test him/her. This team is usually comprised of a psychologist/psychiatrist, neurologist, and speech therapist. An audiologist might administer a hearing test to rule out auditory processing disorders.
Doctors diagnose low functioning autism on three major criteria:
- First is your childs ability to communicate. Your childs doctor will assess his/her verbal skills and nonverbal communication.
- Next, the team will observe your childs behavior. They will watch for stimming and self-injurious behaviors. The team will pay attention to how restrictive and repetitive the behaviors are.
- Finally, they consider the daily impact of behaviors and communication difficulties.
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Education For Moderate To Severe Autism
Although children with moderate autism may have some intellectual or learning disabilities, they can often attend school. Because a mainstream classroom is usually overwhelming, children with moderate autism may enroll in an autism support classroom in a traditional school setting or attend a school specifically designed for students with autism.
Special accommodations in the Individualized Education Program provide beneficial supports that help the children maximize strengths, improve weaknesses, and gain valuable academic, social, emotional, and life skills.
Some children with severe autism have intellectual challenges that make learning difficult. A traditional school setting is impossible to navigate and even an autistic support classroom may be overwhelming.
However, small, therapeutic settings in a traditional or autism specific school can provide an environment that helps children with severe autism learn and grow. Here, educators follow a specialized and individualized plan for each child. With these supports, children with severe autism learn valuable skills.
Studying Autism Along A Widening Spectrum
Studies of “higher functioning” autism began in earnest a few decades ago, after psychiatrists began expanding the borders of the condition we now call autism spectrum disorder, or ASD. Autism is not diagnosed by blood tests or medical scans, but rather by how closely someone’s symptoms fit a definition published in a psychiatric diagnostic manual. Those definitions may change every decade or so, when the manual is updated.
In the late 1980s, American psychiatrists added atypical autism, called Pervasive Developmental Disorder-Not Otherwise Specified , to their diagnostic manual. A few years later they included Asperger’s Disorder. People with PDD-NOS and Asperger’s did not have all the symptoms found in the original definition of autism. Due to those changes, the number of people with “milder” autism grew as did research on them. “It makes sense that, with an autism total population shift, that correspondingly research on those more severely affected would go down as a proportion of the total research landscape,” Dr. Siegel said.
Other factors may be at play. Some research may be harder to do with youth who do not speak fluently, such as studies of how well talk-based therapies work for anxiety, he said.
In a recently completed study, Dr. Siegel and his colleagues wanted to find out what proportion of autism research included those with severe autism. In order to do that, he said, they had to come up with a definition of severe autism.
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Social Communication / Interaction Behaviors May Include:
- Making little or inconsistent eye contact
- Tending not to look at or listen to people
- Rarely sharing enjoyment of objects or activities by pointing or showing things to others
- Failing to, or being slow to, respond to someone calling their name or to other verbal attempts to gain attention
- Having difficulties with the back and forth of conversation
- Often talking at length about a favorite subject without noticing that others are not interested or without giving others a chance to respond
- Having facial expressions, movements, and gestures that do not match what is being said
- Having an unusual tone of voice that may sound sing-song or flat and robot-like
- Having trouble understanding another persons point of view or being unable to predict or understand other peoples actions