A Mom Assess Her Role as a Parent of an Autistic Child

Isaac loves his iPad. It is with him from the moment he wakes until the second he goes to sleep. He has a few games he likes and he really enjoys looking through the photos but his all time love is YouTube. He is pretty typical of many 8 year old boys in that sense. […]

via How My Severely Autistic Son Used YouTube To Speak To Me — faithmummy

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A Second Look at “Uniquely Human”

The book Uniquely Human argues that autistic behaviors are human behaviors.
We feature many of our articles in “Celebrating Individual Abilities” on our new agency blog, which also contains announcements of Advancing Opportunities, along with brief items of disability news that are not sufficiently detailed for this blog. In addition, we reviewed Uniquely Human in this space last year. To see it again, with an update on Dr. Barry Prizant’s brief speech at the United Nations on World Autism Day, March 31, please check out the article on our newly rebuilt and much-improved website, as we continue our blog series on autism appreciation and awareness with a review of Dr. Prizant’s excellent book, “Uniquely Human.”

Rutgers University Offers an Inclusive Setting for Autistic Students

The Rutgers Center for Adult Autism Services offers autistic adults inclusion in a community setting

New Jersey Senate President Steve Sweeney was on hand this week to meet with the first adult with autism at the Rutgers Center for Adult Autism Services (RCAAS) day center. That program was launched late 2015.

“The Center for Adult Autism Services is working to accomplish something that I think everyone agrees should be our top priority,” said Senator Sweeney in a statement on his website. “It allows adults with autism to live as fulfilling a life as possible. We want everyone, no matter what challenges they face, to reach their fullest potential. This support can make a real difference in their lives.”

Rutgers Center Autism

When the first phase of the program is in full operation, the center will offer up to 60 adults with autism (living off campus) fulfilling university jobs. The effort will supported by Rutgers clinical staff and graduate students. The following (second) phase calls for a residential program for 20 adults with autism. These individuals will work on campus and live alongside Rutgers graduate students in an apartment-style residence. These inclusive settings will offer individuals with autism the satisfaction and learning that come from employment. As such, the program will present Rutgers students with important educational opportunities as well.

 

The University’s Douglass campus is already host to the Douglass Developmental Disabilities Center. This on-site program for children and teens on the autism spectrum is accessible to graduate and undergraduate students in education and psychology.

Advancing Opportunities applauds efforts in New Jersey to provide people with intellectual and developmental disabilities settings for full participation in society.

April: Fostering an Awareness, Appreciation, and Understanding of Autism

World Autism Awareness Day

Central to the U.N. Convention on the Rights of Persons with Disabilities (CRPD) is “respect for the inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons… and full and effective participation and inclusion in society” (Article 3). This concept is reflected in this year’s theme for World Autism Awareness Day, “Toward Autonomy and Self-Determination.”

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In the U.S. and throughout the world, the rate of autism is high, affecting children and adults of all socioeconomic and ethnic groups. According to the U.N., “Appropriate support, accommodation, and acceptance of this neurological condition allow those on the spectrum to enjoy equal opportunity, and full and effective participation in society.”

On March 31, 2017, the U.N. held conference on multiple aspects of autism, Toward Autonomy and Self-Determination, which included the following:

In welcoming everyone, Cristina Gallach, U.N. Under-Secretary-General for Communications and Public Information, said “We come together to renew our commitment to raising awareness of the rights of persons with autism – to equal opportunity and full participation in society, on an equal basis, with other citizens. To achieve this inclusive society that we aspire to, we must… ensure that the fundamental rights enshrined in the CRPD are respected.” This is a right that has been recognized since the Universal Declaration of Human Rights was declared in 1948. Continued Ms. Gallach, “When [people with autism] enjoy equal opportunity for self-determination and autonomy, persons with autism will be empowered to make an even stronger positive impact on our shared future.”

U.N. Secretary-General Antonio Guterres could not be present, but he prepared a statement: “On this World Autism Awareness Day, let us play a part in changing attitudes toward persons with autism and in recognizing their rights as citizens who, like everyone else, are entitled to claim those rights and make decisions for their lives in accordance with their own will and preferences. Let us also renew our promise engraved in the 2030 Agenda for Sustainable Development to leave no one behind, and ensure that all people can contribute as active members to a peaceful and prosperous society.”

The keynote speaker, Simon Baron-Cohen, Director, Autism Research Centre, University of Cambridge, was gave an overview of the autism spectrum.

In regard to the “commitment to leave no one behind,” Jackie Pilgrim, a noted disability advocate spoke about dignity. In her work with NAMI Durham she spoke of her organization’s new 8-hour course for police and first-responders to replace the inadequate 1.5 hour course used previously, one for which they have shown “passion” to learn.

Barry Prizant, author of the landmark book Uniquely Human: A Different Way of Seeing Autism, summarized his philosophy:

Uniquely Human

  • De-pathologize autistic behavior (echolalia, stimming). It’s the way we deal with stress and self-regulate. They should not be repressed or otherwise “managed.”
  • Autism is not a tragedy, it can become one
  • Self-determination begins in early childhood. Children at an early age
  • Let’s look at ourselves.

Added Micheal John Carley. The best way to help is to examine ourselves and change the way we view people with autism.

An autism research and education organization, Autism Speaks, initiated the worldwide Light It Up Blue, campaign in its effort to raise autism awareness.    Among many in the autism community, both advocates and self-advocates, Autism Speaks is highly controversial, because that organization is seeking a cure, whereas many people prefer to see autism as simply another way of being, “different, not broken.”

 

National Autism Awareness Month

A ribbon made of multicolored puzzle pieces.  It has become one the most recognizable symbols of autism in the world.  The various colors reflect the many “faces” of autism, a condition often referred to as the autism spectrum disorder (ASD) because no two people with autism are alike.  (The cognitive abilities of people with ASD range from “nonverbal” to intellectually brilliant.)  The ribbon symbolizes solidarity and hope of a happy, fulfilling life for people with autism.  The puzzle pieces remind us that the condition and the people with it are still very much a mystery.

Autism Awareness Month first came to be some 25 years ago, when the Autism Society of America undertook an effort to promote autism awareness.  The primary objective was to “promote … inclusion and self-determination for all, and assure that each person with autism  is provided the opportunity to achieve the highest quality of life.”

 

Three short films that treat autism awareness and appreciation are worth noting:

  • “Make it Stop.” This is a brand-new awareness video to foster understanding of people with autism.
  •  “Talking in Pictures.”  This documentary dispels myths and stereotypes… at least as they apply to everyone with autism. “It’s not that we’re doing it wrong, it’s not that we’re autistic enough to fit in with the world’s idea of autism, it’s that the world’s idea of autism isn’t big enough to fit us all in!”
  • “Perfectly Normal,” is a film about Jordan, a man with Asperger’s, who discusses his everyday life, of which the New York Times publicized an important excerpt.

Furthermore, Sesame Street will debut Julia, a character with autism. This event will be covered in a later article.

 

And some noteworthy facts on autism:

  • In 2014, the U.S. Centers for Disease for Disease Control estimated the prevalence of autism as being 1 in 68 births.
  • Autism comes from the Greek autos” meaning “self.” Swiss psychiatrist Eugen Bleuler in 1910 used the New Latin term autismus to describe schizophrenic symptoms of children; US psychiatrist Leo Kanner first used the term autism in 1943.
  • Asperger’s syndrome is named after Austrian pediatrician Hans Asperger, who in 1944 first described the symptoms in children he was observing.

With a sincere effort of autism awareness, we will be able to treat this population with the dignity they deserve.

Happy Holidays, Everyone!

All of us at Advancing Opportunities wish you, our consumers, families, and supporters (including those of you who have generously followed this blog!) peace and happiness for the holidays:

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Merry Christmas

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Happy Chanukkah – Chag Sameach

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The very best for Kwanzaa

 

And just in time for the holidays, here’s a special treat.  Overcoming her autistic social fears, this lovely ten-year-old girl gives a stunning rendition of Hallelujah that would have made Leonard Cohen proud.

 

 

Autism: Another Way of Being Uniquely Human

Uniquely Human

A review of : Prizant, Barry M. Uniquely Human. New York: SImon & Schuster, 2015.

For many parents, a diagnosis of autism answers one question but does not explain why their son or daughter has such difficulty expressing feelings, needs, and desires or why their social behavior differs so much from that of their peers.  Confronted by this mystery, these parents are understandably anxious.  What Barry Prizant seeks to do is to “turn self-doubt in to confidence and comfort, and to help them see as possible what they thought was impossible.”  The starting point is to adopt a fundamentally different way of seeing and understanding autism.  Most educators speak of “autistic behaviors,” undesirable traits that should be eliminated.  That is the classic medical model of autism, a condition or mental illness, or even a psychiatric abnormality.  That, says Prizant, needs to change.  “Autism isn’t an illness.  It’s a different way of being human…. To help [children with autism], we don’t need to change them or fix them.  We need to work to understand them, and then change what we do.”  In other words, Prizant adopts the perspective of neurodiversity, that conditions such as autism are part of our genetic make-up, a different way of thinking and being, “uniquely human.”  As such, this book makes an excellent companion to Steve Silberman’s NeuroTribes; both books are very welcome additions to the literature on autism.

 

Understanding Emotions
How do we work to understand children with autism, to help them?  And how do we change what we do?  Prizant explores these questions in the first part of Uniquely Human, “Understanding Autism.”  He proposes six steps:

Ask “Why?”  The first step is to go beyond answering why a child exhibits certain behaviors or patterns of speech with “because he has autism,” which leads to answering a question of why he has autism with “because he shows certain behaviors.”  Asking “Why?” entails going deeper, inquiring why a child does what she does.  The answer, says Prizant, is that the person is feeling emotional dysregulation.  In other words, people with autism experience discomfort, confusion, and anxiety more intensely than do most people, along with considerable difficulty coping with these emotions.  Many people with autism do what they do because it helps them, these behaviors are coping strategies or mechanisms.  What the autistic child wants – and needs – is information (even if the answer is readily apparent) to reduce the anxiety of uncertainty.

Listen.  Asking “Why?” is about empathy, and so is listening.  What may sound absurd or silly is, in fact, not.  The autistic child is telling a story.  For example, repeating a phrase, known as echolalia, is not nonsense talk, just another example of autistic behavior.   And it’s not “autistic behavior,” a pathology that presents an obstacle to the child fitting in socially.  Echolalia is, in Prizant’s words, an alternative way of communicating, using language for the same reasons everyone else does.  In fact, echolalia serves as a starting point, a learning strategy to acquiring language.

Accept enthusiasms.  Enthusiasms is Prizant’s term for what many people term “obsessions.”  Rather than being another “autistic behavior” that needs to be eliminated for the child to fit in socially, provide the child with autism with a motivational tool for learning.  Teachers and parents should use the autistic child’s enthusiasms as a bridge to learning other skills.  Hobbies fill a need in all of us: “An experience feeds a basic neurological need to be engaged, to appreciate beauty, and to experience positive emotion.”  These interests can lead one to find a uniquely fulfilling path in one’s work and life, as we are reminded by Sir Ken Robinson in his book, The Element. In this chapter, Prizant gives several excellent examples.

Understand trust, fear, and control.   According to Prizant, autism is best understood as a disability of trust: trust in the body, the world, and others.

  • Trust in the body. Children with autism have to cope with involuntary motor movements and, in the brain, thoughts.
  • Trust in the world. From the perspective of a child with autism, any change in routine is a violation of his trust in the world around him.
  • Trust in people. Because many people with autism find it difficult to “read” people, to predict their behavior, unexpected actions (even those that are entirely unintentional) pose a threat.  Autistic people go through life in a state of a heightened, hypervigilant alert.  Other people with autism have the opposite challenge: they react more slowly than others, internalizing their anxiety rather than directing it outward through behavior.

When one’s trust is challenged, the natural reaction is often to seek to exert control.  That does not mean that the autistic person is controlling or that such behavior needs to be extinguished.  What parents and teachers need to do is to build trust by acknowledging attempts to communicate, giving the person with autism choices in planning events, accepting the individual’s dysregulated emotional state, being dependable and clear, and celebrating successes, even small ones.

Recognizing emotional memory.  Emotional memories are those that are associated with a happy or sad, hopeful or frightening event.  Given that many people with autism have exceptional memory and, as stated earlier, often live in a state of heightened alert (similar to PTSD), these emotional memories are particularly strong in people with autism.  “A seemingly small association,” says Prizant, “can trigger what seems to be a disproportionately dramatic reaction.”  Anyone working with an autistic child must try to avoid these emotional triggers or offer something that can provide comfort, such as noise-cancelling headphones.

Helping with social understanding.  People with autism having difficulty with social understanding react in one of two ways:  They are oblivious to their blunders, or they are extremely anxious about what they do not understand.  Social skills training can help, but because the rules of social understanding come with so many exceptions, such teaching does not always work.  At the very least, social rules need to be taught very clearly and with directness – and explaining the meaning of phrases exactly and literally.  In addition, labeling pictures of people expressing certain emotions is ineffective; describing emotion in words is one of the most abstract tasks anyone can undertake.  It is better to introduce the appropriate label at the very moment that person is experiencing that particular emotion.  Moreover, says Prizant, the effort of autistic individuals to succeed in this area often causes them great stress.

 

 

Living with Autism
Teaching and caring for a child with autism takes a special person, someone who has “got it.”  These people know how to relax with the autistic child, to relate to him.  What does it take?  As Prizant explained, these people have empathy and sensitivity.  They ask “Why?” – why an autistic child is acting at this time and not another.  People who have “got it” share control with the autistic child.  They have a sense of humor.  They instill trust.  They are flexible.  What these people who have “got it” do not do is compile a list of deficits.  Rather than paying attention to a plan, they pay attention to the child, overlooking small setbacks in favor of seeing the overall trajectory of improvements in the way the autistic child is able to self-regulate.  For teachers and others working with the child with autism, they respect the parents’ hopes and dreams.  After all, says Prizant, parents know their child best.  Parents, in turn, should trust their gut, follow their instinct, while finding support groups with other parents of autistic children.  In addition, parents should actively advocate for their children but, in so doing, know the difference between being assertive and aggressive, as Prizant aptly discusses.