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We often hear that autism is on the rise. According to the Centers for Disease Control, ASD prevalence has risen from 1 in 150 in 2000 to 1 in 54 by 2016. But it is not necessarily a case of more children developing autism – instead, there is a deeper understanding of the spectrum, as well as more advanced assessment tools, which leads to more children being diagnosed.
Years ago, autism diagnoses were given to low-functioning, usually non-verbal children. We now realize that the spectrum is so broad that many children on the spectrum are extremely high functioning – sometimes to the point that their autism is barely recognizable. However, autism is autism, and children on the high-functioning end of the spectrum need just as much support, understanding, and accommodation as those on the lower end of the spectrum.
What is high-functioning autism?
High-functioning autism (HFA) is a term used to describe someone whose autism symptoms are not severe.
Until 2013, most cases of HFA were diagnosed as Asperger Syndrome. However, Aspergers was removed from the Diagnostic and Statistical Manual of Mental Disorders and reclassified as HFA or level one autism. This allowed more access to support than what was granted to those diagnosed with Aspergers.
The autism community does not welcome functioning labels. While the severity of autism varies from child to child, it is not simple to place the level of functioning in a box and allocate it to certain symptoms. This is because people labeled as high functioning can often have significant needs that are overlooked. For example, children who are high functioning and attend mainstream schools can be misunderstood and be seen as being rude, too loud, uncooperative, or disrespectful. But this is not the case. Children with HFA are often lacking social cues and ‘cannot read a room’. As a result, they will often speak out of turn or give opinions that seem inappropriate. They can be fixated on their string of thoughts, resulting in them speaking over people or blurting things out when there should be quiet. Children with HFA very often have a hypersensitive auditory system, meaning they have the tendency to seek auditory stimulation. This can cause them to speak very loudly and struggle to do things like close a door, look around for something, or handle items subtly, with a volume most would consider appropriate.
What does high-functioning autism look like in an adult?
HFA doesn’t present very differently in adults. The difference is that they have had more time and exposure to the world and have learned how to cope and modify their behavior a little bit more. However, adults with HFA can still struggle with social and communication challenges. They have difficulty reading social cues and body language, empathizing with others, participating in conversations easily, and understanding figurative language. In addition, it can make establishing friendships and relationships challenging. An adult with HFA usually has one or two close friends they have known for a very long time, rather than a range of friends in their daily lives.
Why is high-functioning autism so challenging to detect if the child has already been diagnosed with ADHD?
Just because a child has ADHD does not mean he has autism. It is very common for children with autism to be misdiagnosed as having ADHD. Many overlapping symptoms include repetitive behaviors, trouble concentrating, and poor social skills. It is also possible for someone to have both autism and ADHD.
There are subtle differences, however. For example, children with autism often develop an overwhelming fixation on things they enjoy and have no interest in things they dislike. However, children with ADHD can be fixated or obsessed with something but quickly lose interest.
A mental health professional will know how to differentiate between the symptoms of each to ensure a proper diagnosis.
Should high-functioning autism be considered a different disorder from mainstream autism?
It depends on which perspective you are looking at it from. On the one hand, even when a child is high functioning, the autism traits can be quite prevalent. Denying recognition of the disorder can put a lot of pressure on them to ‘just fit in and be normal”. It also denies them access to desperately needed insurance-covered interventions.
On the other hand, the autism community does not welcome functioning labels as many people on the spectrum may function independently but still require a lot of support for what can seem like invisible challenges. In addition, people labeled as high functioning can often have significant needs that are overlooked, or it can imply strengths that are not present. It also suggests that those with low-functioning autism have no strengths and abilities, which is also not true.
High-functioning autism should be recognized for what it is – autism. If you consider other developmental disorders like down syndrome or neurodevelopmental disorders like dyslexia and ADHD, the challenges are recognized, even when the symptoms are ‘mild’.
Why is autism called a disorder when some people with high-functioning ASD are more intelligent than average?
If you visit a school for gifted and talented children, you’ll be surprised to see how many meet the criteria associated with high-functioning autism. Like children on the spectrum, gifted children have heightened senses and are very sensitive to sound, light, sensations, and other sensory experiences.
Because they are cognitively advanced, they also struggle to fit in and socialize with their neurotypical peers.
The focus shouldn’t be on the word’ disorder’ – instead, it is a different way of experiencing the world. The term ‘disorder’ also doesn’t imply that autism negatively affects intelligence. In fact, many low-functioning children on the spectrum are brilliant. However, they may be non-verbal and have less advanced social and sensory integration abilities, so their intelligence often goes unnoticed.
You can ask the same thing about Attention deficit Hyperactivity disorder (ADHD) and Sensory Processing Disorder. When a person is wired to operate differently than the majority of society, we diagnose it as a disorder. In no way does that make the person less than others or unintelligent. It simply describes his reality.
Are most students with high-functioning autism placed in special education?
Each child with ASD is different from the next, and the decision should be made on a case-by-case basis. For example, children with ASD have attended mainstream schools and coped well, whereas others have not.
It’s also important to look at any other challenges that may coexist alongside autism, such as Dyslexia, ADHD, or even epilepsy. In these cases, a smaller, more nurturing environment may be less overwhelming and more conducive to learning.
Most schools offer individualized programs or support for children on the spectrum, and it is essential to disclose all the facts to ensure you make the best decision. Being open also allows the school’s administration to be honest about what support measures they can implement.
Signs and symptoms of high-functioning autism
Physical handicaps like limited mobility, hearing, or vision are easy to notice. However, differences in cognitive abilities cannot actually be seen. A child with HFA looks the same as anyone else, which is why it may be unexpected when we notice them doing things differently. Experts will diagnose a child with autism by looking for common behaviors which are brought about by the disorder. If enough of the autism behaviors are only manifesting in the child to a moderate degree, the child will be diagnosed with high-functioning autism.
Children with high-functioning autism tend to struggle with emotional regulation, rigidity, obsessive behaviors, sensory issues, executive functioning, social skills, verbal communication, and mood disorders.
Struggling to control emotions
Emotional outbursts, meltdowns, or apathy are examples of how children with HFA struggle to control their emotions. They can overreact to situations that others would easily manage or underreact to situations that others would find distressful. People with HFA are also vulnerable to emotional dysregulation when faced with something unpredictable or out of their routine. This is usually one of the most obvious symptoms, even though onlookers may see it as poor behavior without realizing that it is a symptom of autism.
Some of the other symptoms can be more subtle, and only those who have a broader knowledge of ASD will recognize them early on.
Here are a few others to look out for.
Obsessive tendencies and repetitive behaviors
Children with HFA tend to be highly rigid in thinking and gain comfort from predictable patterns and ritualistic behavior. As a result, they can become very agitated when faced with change. For example, they may insist on wearing a red shirt on Monday, a blue shirt on Tuesday, a yellow shirt on Wednesday, and so on. They can find it highly distressing if Monday rolls around and their red shirt is unavailable. They also become intensely focused – to the point of obsession – on particular topics or interests. They can find it difficult to talk about anything else and will usually veer a conversation back to their latest obsession, should others change the subject.
Children with HFA usually don’t have difficulty understanding high-level language, the rules governing it, and advanced vocabulary. The difficulties come with the fluidity of language and the abstract nature of figurative language. For example, if someone jokes around with them and states, ‘I am just pulling your leg,” the child would be left confused because the child takes everything very literally.
The challenges of recognizing social cues are one of the most recognizable traits of a child with HFA, although people may not understand the cause. Children with HFA have difficulty interpreting body language and reading facial expressions. They also find it challenging to ‘read a room’ and often interact in a way that seems inappropriate to others. For example, if they are in a situation where people have received bad news and the atmosphere is somber, they may loudly state a random fact, like ‘Look at how Pete’s belly is sticking out of his shirt’. They could also address the elephant in the room without any idea it is sensitive or start talking about their usual topic of interest. This can come across as rude or insensitive. Children with HFA also have trouble allowing others to speak and regulating the volume of their voices. These challenges can make it difficult to form friendships and social connections.
When a person with autism is overwhelmed by sensory input, it leads to sensory overload. This is a form of sensory processing disorder and can cause meltdowns – often confused for tantrums. When we speak about them being overwhelmed, it is not necessarily in a way we can relate to. Sure, we become overwhelmed when too much is expected of us, we have too many commitments, or we are generally tired and stressed. However, while people with autism are not exempt from this, they become easily overwhelmed on a sensory level. Too much noise, strong smells, large crowds, or even a scratchy label on a shirt can completely overwhelm the senses, rendering them relatively incapacitated.
How is high-functioning autism diagnosed?
High-functioning autism is often misdiagnosed since the symptoms are often subtle and attributed to things like behavior, attitude, and upbringing. Very often, the first diagnosis is another developmental or processing disorder like ADHD, sensory processing disorder, or obsessive-compulsive disorder. These diagnoses can exist together with autism, but it is not always the case. There is no blood test, scan, or swab that can detect autism. A diagnosis can only be made by observation.
Your pediatrician will look at your child’s medical history (to rule out other issues, such as a brain injury), and see if the child exhibits behaviors typical for children on the autism spectrum. The pediatrician will refer children who meet enough of the specified diagnostic criteria to a mental health expert or another practitioner who can evaluate and diagnose autism spectrum disorders.
The observable behaviors typical of high-functioning autism include but are not limited to:
- Difficulty in making or maintaining eye contact.
- Overly sensitive to smells and textures.
- Extreme emotional responses after being subjected to large crowds, a lot of stimulation, noise, and light.
- Slow to develop language or they make up their own words.
- Parallel play – playing alongside peers, not with them.
- The inflexibility of thought.
While no child with autism is the same, and some may not display all of these behaviors, if a pediatrician notices enough of them, they will refer the child for an assessment. There are a few assessment tools available for the specialist to use.
The Autism Diagnostic Observation Schedule
This is a standardized assessment that looks at how the child interacts socially, communicates, engages in play alone and with others, and uses materials imaginatively.
The Autism Diagnosis Interview
This is a diagnostic instrument that focuses on three areas of behavior – communication and language, reciprocal social interaction, and repetitive, stereotyped interests and behaviors.
The Gilliam Autism Rating Scale
This scale assists in identifying and diagnosing autism and its severity and The American Psychiatric Association’s Diagnostic and Statistical Manual, Fifth Edition (DSM-5) provides standardized criteria to help diagnose ASD.
Treatment for high-functioning autism
There is no cure for autism or for high-functioning autism. However, several treatments are available to mitigate the challenges and improve the quality of life for children on the autism spectrum. For example, early intervention can help kids gain more emotional awareness and empower them to have more control. Therapy intervention programs can also help build language skills, decrease detrimental behaviors, and improve sensory processing.
Some of the available therapies include:
Behavioral approaches look at the cause behind specific behavior and implement tried and true strategies to increase wanted behaviors while decreasing unwanted behaviors. These are the most common forms of treatment and are backed by scientifically proven to be effective. Applied Behavior Analysis (ABA) is the most widely practiced behavior therapy for children with autism. The ABA approach will establish critical skills in children. These skills are prerequisites for communication, social, adaptive, behavioral, and other life skills. ABA can be implemented to lay the groundwork and make the learning process far less overwhelming and stressful.
Developmental approaches look at improving specific developmental skills, e.g. language, motor, and social skills. They are often used in conjunction with ABA. The most common developmental treatments for children with ASD are Speech and Language Therapy, Occupational Therapy, Sensory Integration Therapy, and Physical Therapy.
These are treatments that are conducted within the classroom setting. The most notable of these approaches is the Treatment and Education of Autistic and Related Communication-Handicapped Children (TEACCH) approach. It recognizes that people with ASD thrive on consistency and are visual learners. TEACCH guides teachers on classroom strategies that will improve academic and other outcomes. It utilizes concepts such as ensuring the daily routine is represented in writing, images are displayed where they can be easily seen, boundaries are clearly set, and all verbal instructions are supported with a visual representation.
This treatment approach focused on building emotional bonds and improving social skills. It often involves parents or peers. Floor time (also known as The Developmental, Individual Differences, Relationship-Based model) encourages those working with the child to hone their interest and expand on opportunities for communication.
The Relationship Development Intervention approach also focuses on the child’s interests and uses them to build motivation and enthusiasm. This, in turn, encourages participation in shared social interactions.
There is no medication to treat autism and its core symptoms. However, medication is sometimes prescribed to treat symptoms of secondary challenges such as anxiety, hyperactivity, insomnia, or inability to focus.
Psychological approaches treat secondary issues such as depression, anxiety, and other mental health issues parallel to autism. For example, Cognitive-Behavior Therapy (CBT) focuses on learning the connections between thoughts, feelings, and behaviors.
A CBT therapist works with the child and identifies the thought patterns and behavior that can create emotional and mental challenges. They then lead the patient in adjusting their thought process around the issues and how they react to certain situations.
Complementary and Alternative treatment
Complementary and Alternative therapy approaches often supplement more traditional approaches. They include special diets, animal therapy, art therapy, herbal supplements, or relaxation therapies.
High-functioning autism is a double-edged sword. Despite an autism diagnosis, your child generally manages to have a reasonably straightforward education experience, function in society, and go on to have families and careers.
But they are also misunderstood –their autism is ‘not obvious,’ so they are expected to always behave within social norms. When they don’t, they can be ostracized, judged as being odd, or put in a stereotype box and constantly compared to the likes of Sheldon Cooper from Big Bang Theory.
It’s essential that everyone understands the complex world of autism and gives these young people space just to be who they are. It’s equally as important that the adults in the life of a child with high-functioning autism take a proactive stand to maintain and nurture the child’s mental health from an early age. They are up against a lot, and they can use every advantage we can give them.