What you should know about severe autism

Media is slowly getting better in it’s portrayal of people with autism in both movies and television, while many still hold onto to the perception of “Rain Man”, I do believe we are moving in the right direction. Still, little is discussed or talked about when it comes to children and adults with severe autism. Some may refer to severe autism as “low functioning when in fact autism is a spectrum in both symptoms and behaviors and varies from person to person.

Children and adults with severe autism often display the following signs :

  • Impaired social interaction
  • Difficulty in communicating- both expressive and receptive
  • Obsessive compulsive disorder
  • anxiety
  • aggressiveness
  • self-injurious

According to the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), there are 3 levels of severity based on social communication impairments, restricted, and patterns of behaviors. The severity level (Level 3) is defined as requiring very substantial support. For example the person may exhibit very limited initiation of social interaction and extreme difficulty with coping and change. signs may include an indifference in others, using negative behavior to communicate, very little or echolalia, sensory sensitivity will vary from severe to none, may be self-injurious and have an intellectual disability.  Below you will find articles on understanding severe nonverbal autism:

5 nonverbal children that found their voices

Autism: How do you communicate with a non-verbal child

Helping nonverbal kids to communicate

I have nonverbal autism…Here is what I want you to know

Nonverbal autism: Symptoms and treatment activities

Missing brain wave may explain language problems in nonverbal autism

Overview of nonverbal autism

What can we learn from studying severe autism?

What makes severe autism so challenging?

Why being nonverbal doesn’t mean being non-capable

Why children with severe autism are overlooked?

Updated 8/23/2020

9 Rare Genetic Trisomies Beyond Down Syndrome (Trisomy 21)

Published by: Very Well Health
Written by:  Kathleen Fergus

Trisomy is when three copies of a chromosome are present instead of two (all chromosomes normally come in pairs). While most parents-to-be are familiar with Down syndrome and will undergo prenatal screening to detect it, there are other, potentially more serious trisomies that may occur, including Edwards syndrome, Patau syndrome, and others. Some may cause few, if any, symptoms, while others can lead to severe defects that make life—or even the pregnancy—unsustainable.

A gene is essentially a packaged bundle of chromosomes that contain all of the coded information related to our physiological makeup and metabolic function. Each gene typically contains 46 chromosomes, 23 of which we inherit from our mothers and fathers, respectively.

Of these, 22 pairs are autosomes, which determine our unique biological and physiological features. The 23rd pair is sex chromosomes (known as X or Y), which designate whether we are biologically female or male.

In rare instances, a coding error may occur when a cell divides during fetal development. Instead of splitting cleanly into the two identical chromosomes, the newly divided chromosome will have extra genetic material. This can lead to either a full trisomy (in which a complete third chromosome is created) or a partial trisomy (in which only part of the chromosome is copied). From this point forward, the error will be repeated and repeated as the cell continues to divide.

Down syndrome, the most common genetic disorder in humans is referred to as trisomy 21 because there is an extra copy of chromosome 21 in a gene. Other genetic disorders are similarly named.

An Overview of Absence Seizures

Published by: Very Well Health
Written by: Reza Shouri, MD

An absence seizure, often referred to as petit mal seizure, is a non-convulsive seizure that is often not recognized as a seizure at all. Absence seizures usually occur in children who have epilepsy, but adults can have them as well. While absence seizures are not as disruptive or obvious as convulsive seizures, they cause impairment of consciousness and interfere with learning, driving, and other aspects of life.1

Absence seizures are typically a childhood condition. For children who do not have other types of seizures, absence seizures tend to stop on their own after adolescence. Often, children who have epilepsy characterized by multiple seizure types also experience a significant decrease in the absence seizure type after adolescence.1

Symptoms

Absence seizures can go unnoticed. They can occur several times a day and rarely cause disruption, noise, or clearly obvious manifestations. Sometimes, a person may experience them for months before others begin to take notice. Click here to read the rest of the story.

 

Iowa autism advocate’s brush with police leads to proposed driver’s license designation

Published by: Omaha World-Herald
Written by:

Tyler Leech was leaving a church group’s bowling outing in West Des Moines one evening when he was pulled over by a police officer. A hard-rock party was going on nearby at the Val-Air Ballroom and there were a lot of police in the area.

Leech has autism. “The cop asked me, did I know that my tail light was out, and I looked at him all confused,” he said.

Before he knew it, the Des Moines man was out of the car, handcuffed and being subjected to a pat-down. The officer searched his pockets and asked if he’d been smoking marijuana.

“I told him no, ‘I’ve never smoked anything in my life,’” Leech said. He doesn’t even drink alcohol.

When no drugs turned up on Leech or in a search of the car, he was released. But the experience was traumatic, said his mother, Sheri Leech.

“He was embarrassed and ashamed and he didn’t even tell his dad it happened,” she said. “He felt very violated being handcuffed.”

She said the incident could have had a far worse outcome if her son had become frightened and tried to run, resisted being detained or tried to pull his phone out of his pocket. “My son could have been shot,” she said.

Tyler Leech, 27, decided to do something about that. Click here to read the rest of the story.

Majority Of States Failing To Meet Obligations Under IDEA

Published by: Disability Scoop
Written by: Michelle Diament

Less than half of states are doing what they should to serve students with disabilities in compliance with federal special education law, the U.S. Department of Education says.

The agency indicated in a report out late last month that just 21 states satisfied the “meets requirements” threshold for the 2018-2019 school year in annual evaluations of their obligations under the Individuals with Disabilities Education Act for students ages 3 to 21.

Meanwhile, 27 states and Washington, D.C. were classified as “needs assistance,” many of which have qualified for the designation for two years in a row or more. Two states — New York and Vermont — received the lower designation of “needs intervention.” Click here to read the rest of the story.

An Overview of Doose Syndrome

Published by: Very Well Health
Written by: Heidi Moawad, MD

Doose syndrome is a rare seizure disorder that begins during early childhood. This condition is also called myoclonic astatic epilepsy and myoclonic atonic epilepsy.

Doose syndrome is considered a type of generalized epilepsy. The seizures of Doose syndrome may be difficult to manage with medication. As children reach adolescence or adulthood, they may improve, and treatment might not be required anymore.

Epilepsy is a tendency to have recurrent seizures. Doose syndrome is an epilepsy syndrome. There are a number of different epilepsy syndromes. Epilepsy syndromes have certain characteristic features—such as the age at which the seizures begin, the type and frequency of seizures, associated symptoms, and a hereditary pattern. Click here to read the rest of the story.

How Impulsive of Me

Published by: Psych Central
Written by: Kelly Babcock

One of the hallmarks of ADHD is a problem with impulse control. Impulsivity is so common that we are known for it.

And some of the subtle ways that it impacts our lives often go unrecognized because being impulsive is usually only seen in the more explosive and dramatic examples of its manifestation in our behavior.

It’s not unlike the discovery years later that a sibling has a milder form of ADHD that went undiagnosed because, in constant comparison to the more challenged member of the family, they appeared to not be one of us.

So too with impulse, the behaviors that did not result in something exploding are not recognized as impulsive in comparison to that time when I … well, let’s not dwell on the past shall we?

So sometimes behaviors that are at their root impulsive do not appear to be because they aren’t dramatic. Click here to read the rest of the story

How to Deal with Obsessive and Repetitive Behaviour

Published by: Durham Region Autism

For many people with an Autism Spectrum Disorder (ASD), obsessions, repetitive behaviours, and routines that might appear overly rigid or unhealthy to neurotypical individuals are actually a source of comfort and self regulation. Like all things, however, when used too much, these behaviours may detract from other things or cause distress to the person with ASD, so understanding these needs and knowing where to draw a line is important. To help a person with ASD learn how to manage these issues, it’s vital to understand the behaviours’ function and how to respond to them.

Why People with ASD Develop Obsessions and Repetitive Behaviour

People with an ASD may have any number of obsessions (some of them as common as certain TV shows), but often they center around a “technical”, academic, or mechanical skill-set, such as computers, trains, historical dates or events, or science. Obsessions can become quite odd and particular, however, involving specifics about numbers or certain shapes (things like car registration numbers, for example, or bus or train timetables, and the shapes of body parts or stones). People with ASD can feel quite strongly about these things, no matter how mundane they may seem to others.

Children with ASD develop obsessions as they help to give them a sense of structure, order, and predictability, which counterbalances the chaos they may feel is inherent in the world around them. They also give a solid, sure base on which to begin conversations and break the ice with others. For these reasons, it’s vital to not label these obsessions as unhealthy by default, but rather to allow the child with ASD to explore them. One should try to understand the function of the behaviour and remain observant for signs of things going too far. Such signs include the seeming distressed while partaking in their chosen hobby, signs they wish to resist engaging in it but cannot (it’s become a compulsion), or signs it is making the child withdraw socially more than he or she normally would. Similarly, it may need to be managed if it becomes seriously disruptive to others. Click here to read the rest of the story.

8 Tips for Parents of Children with Asperger’s Syndrome

Published by: Durham Region Autism Services

People with Asperger’s Syndrome have difficulty with the social aspects of life and often have inappropriate responses to social situations. One of the major problems for children with Asperger’s Syndrome is understanding social cues in a given situation. Parents often struggle trying to find the best ways to help their Asperger’s child; it takes time, patience, practice and compassion.

While many parents notice something unusual in their child quite early, most try to explain “unorthodox” behavior of their child by all possible reasons except for the most likely one. When the fact that something is wrong becomes obvious, parents bring their child for psychological assessment. Accepting the diagnosis is a very difficult step. Denial that your child has Asperger’s will not help, the sooner you  accept the reality, the better for  you or your child.

The following tips can be useful for parents of Asperger’s children:

  1. Do not coddle or shelter your child from any situation that might set him/her off. Exposing your child to social situations will allow opportunities for both of you to work through them. With your guidance and over time, your child will be able to learn what the appropriate behaviors are in various situations. In addition, learn what your child’s triggers are to better prepare yourself to diffuse or alter a possible meltdown or display of undesired behavior(s).
  1. Be clear in your explanations of expected and/or desired behaviors when the situations arise. Do not expect that your child should know how to behave in different social situations and settings. Walk them through (thoroughly, but with the use of age-appropriate language) appropriate behaviors as well as emotional responses in accordance with the given social situations. You will have to repeat your explanations, but with time, your child should have a better understanding of the social skills necessary to achieve positive social interactions in diverse situations.
  1. Embrace your child’s passion, creativity, humor and energy when he/she exhibits it. With so much attention on changing your child’s behavior, you have to remember to celebrate the amazing traits of his/her personality. Children will notice the negative attention they are receiving as well as how much work they need to do to be able to enjoy a social life. Use every opportunity to admire your child for the qualities that make them special, talented and loveable. You may forget how important positive reinforcement is when you’re preoccupied with anxiety over the next Asperger’s instance.
  1. Your goal should always be to diffuse the situation. Going head to head with your child will never yield constructive results. If your child has an outburst in any social setting, do not yell at them because that will only make it worse. For example, if you are in a restaurant and the waitress gives your child the wrong meal, don’t yell at your child to stop screaming, crying, banging on the table or for whatever reaction he/she has in response. Ask your child to come with you and take a walk. After you’ve been successful in helping your child regain composure, have a discussion to convey to one another your child’s thoughts and emotions throughout that particular experience. Use this teachable moment to work through your child’s emotions together while coming up with different ways that they can handle a similar situation (or even the same one) in the future. Click here to read the rest of the story

Often Overlooked Learning Disorder May Affect Millions of Kids

Published by: PychCentral
Written by: Rick Nauert 

New research suggests nonverbal learning disability (NVLD), a poorly understood and often-overlooked disorder that causes problems with visual-spatial processing, may affect nearly 3 million children in the United States.

A new study by led by Columbia University Irving Medical Center is the first to estimate the prevalence of NVLD in the general population. If accurate, the prevalence of NVLD makes it one of the most common learning disorders.

The study appears online in JAMA Network Open.

“NVLD is a huge and hidden public health burden,” said Dr. Jeffrey Lieberman, chair of psychiatry at the Columbia University Vagelos College of Physicians and Surgeons and Director of the New York State Psychiatric Institute.

“This important work might never have come to light if not for the support of dedicated advocates and their philanthropic support. We hope that these findings raise awareness of the disorder and lead to an understanding of its neurobiology and better treatments.”

The name of this neurodevelopmental disorder may be part of the problem. Children with NVLD are not nonverbal, as the name suggests, and have no difficulty reading. Instead, children with NVLD have difficulty processing visual-spatial sensory information, which can cause problems with math, executive function, and fine motor and social skills.

“Children with this disorder might shy away from doing jigsaw puzzles or playing with Legos,” said lead author Amy E. Margolis, Ph.D., assistant professor of medical psychology at Columbia University Vagelos College of Physicians and Surgeons. Click here to read the rest of the story.