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Jan 17
Love1

Let’s Play: A Guide For Families

By Featured, Parenting

As a companion to the CDC’s Learn the Signs. Act Early. materials, we have created a play-focused guide for parents of children ages 1 to 5. This books is full of play activities that you can do with things you already have in your home, and it will give you opportunities to observe, encourage, and participate in your childs growth as they reach developpmental milestones.

Each page of the guide has activities for a particular age and relates to individual developmental domains. The goal of the manual is to encourage play, which is a key part of early development and to give parents a chance to get a better image of their child’s development in areas of concern or in areas where their child may not have had opportunities yet to show or develop their skills.

Download the Let’s Play Guide PDF

(For organizations wishing to professionally print the guide as a folded tabloid booklet, download this version.)

 

Apr 15
Love0

Film Review: Music (2021)

By Self Advocacy

This blog usually covers topics related to autism or topics related to neurodivergence. As such, my knowledge of the creative arts aren’t exactly necessary for this type of work. However, I am more than willing to make an exception or two should the need arise that requires perspective from a neurodivergent creative; this atrocity masquerading as cinematographic art is one such exception. I am of course writing about pop singer Sia’s debut ‘film’ Music.

Do not get me wrong. Portraying both non-verbal autism and having the autistic character be female (when most representations are male) are worthy concepts for a movie. However, this extremely patronizing and clichéd assault on cinematography was not the way to do it.

If you somehow do not take my word or the words of the several autistic YouTubers who commented on it, Rotten Tomatoes has given the film a 10% rating with an audience score of 15%. To put that into perspective, the film Cats got a 19% critic score and Batman and Robin got an 11% score on the same website. Getting a lower score than two of the worst films critiqued on that website is a horrid achievement in and of itself, but that is, thankfully, its only achievement.

This is not yet even getting into the controversies when it comes to the film’s creation, casting, editing, and Sia’s response to criticisms.

To begin, the film’s trailer was panned from the start over the reveal that Sia’s “muse”, neurotypical Maddie Ziegler, would be playing the nonverbal Music. Naturally, autists everywhere were outraged. One, Sia’s decision took away a casting opportunity from an actress who’s actually autistic. Two, Ziegler was uncomfortable in playing this role to the point that the poor girl had sobbing breakdowns on set over fear that people would hate her for this movie. Three, Ziegler having no say in this adds even further fuel to the abusive and manipulative implications of her relationship with Sia. And four, despite Sia saying that she unsuccessfully tried the role with one nonverbal actress and that she cast Ziegler “out of compassion”, reports and interviews from a few years prior state Sia developed the project with Ziegler in mind and merely lied about the nonverbal actress to save face. Not helping was the fact that the Australian idol had supposedly been researching autism for three years prior to production, yet the results of her ‘passion project’ show that either Sia is extremely ignorant and surrounded by enablers or that Sia cannot do her homework to save her life. Or in this case, her career.

The criticisms escalated once scenes were shown of the characters using prone restraints on Music to calm her during a meltdown. The one introducing the use of said restraints even refers to it as “crushing” Music with “love”. Being forcibly immobilized is incredibly traumatic to an autistic person both on a mental and physical level. The act is also incredibly dangerous as it can suffocate and kill the person being restrained; autistic children have died in the past because of this technique. I myself have witnessed firsthand prone restraints being used on distraught young teenagers. It does not calm them down or deescalate the situation. The criticisms reached a point that Sia stated that the scenes showing the use of restraints would be removed upon release and there would be a disclaimer advising against their use. The US release is unedited.

The final nail in Music’s pre-release coffin was an escalation of Sia’s responses to these criticisms. The most telling of these were her Twitter responses to the several autistic actors who rightly called her out on the fact that Sia put no effort into including anyone who was actually autistic in the planning of the film or made an effort to find an autistic actor. Sia’s responses range from “Maybe you’re just a bad actor” to profanity usage claiming that they have no idea what they are saying because they have not seen the movie.

Yet the ‘film’ was somehow nominated for 2 Golden Globes despite being so ill-received! This blogger speculates that the powerful devices called money and notoriety were at play here. Being the directorial debut of an incredibly popular pop star as well as said pop star’s financial influence were most likely the reasons why the movie was considered in the first place, sad to say.

Music’s premise is one that continues to reinforce harmful stereotypies about people with disabilities. The kind of movies that prop up the disabled as if they are some kind of inspirational paragon for going through life with their handicaps (“Oh, they’re so brave!”). Usually these paragons who can do no wrong are handed off to sullen family members who will slowly become happier over the movie as their disabled burdens touch everyone around them with their magical pixie dust brand of oblivious pluck (“I thought I was raising Music, but it was really Music raising me!”). The fact that these types of movies and other mediums are made primarily for Oscar bait and nothing else is downright insulting for people like myself who are usually the ones being depicted in them. The insincerity and artificiality in this one is sickening.

Music herself is portrayed as blissfully unaware of everything around her. We almost never find out anything about Music aside from her special interest – dogs – and the sequences that, supposedly, only take place in her head. However, the latter is rendered moot by her sister and the neighbor getting sequences of their own later. We never really learn anything else about her. Aside from her autistic traits, we don’t know what she likes, what she dislikes, or even how she feels about the new situation she’s in. Or any, for that matter. The movie claims that Music understands the situation she’s in and can comprehend what goes on around her, but every single scene has Music staring off into space with her mouth open in a dopey wide grin, doing something incredibly childish even by child standards, ‘attempting’ to speak like the Hulk (“Make you eggs!”), and flailing around so much that it looks like she is having a series of epileptic seizures. Sadly, this is likely how Sia sees autistic people in general – not as actual people with hard lives in a world that doesn’t understand them, but as props. Things to pity and nothing more. We only exist for normal people to feel better about themselves.

That’s not to say that the title character is the only problem with this movie, oh no. This movie is rotten to the core with its bad writing and clichés. As I mentioned earlier there continues to be a continuation of harmful stereotypes in this film and a disturbing parallel between Simple Jack (a parody film-within-a-film made 10 years ago on this very topic) and oh stars, does it show. The premise of the film is as predictable as it is insulting: the grandmother and sole caretaker of our title character dies and custody is given to the real main character of the film – unemployed recovering drug addict/dealer and half-sister Kazu, who is less than thrilled with her new burden. Over the course of the movie, Kazu tries, unsuccessfully, to pass off Music to anyone willing to put up with her, including dropping her off at an adoption agency. Eventually, she learns to ‘accept’ Music as Music changes the lives of everyone around her. Blech.

In addition, there is a boy, Felix, whose side plotline interrupts the film several times and never ties into the main story. Felix is also autistic and lives in an abusive family. It ends with his father killing him during a domestic dispute. That’s it. We never know what happened to his parents. His father never receives any sort of karmic justice. The side plot just ends on that grim note. It’s sickening.

As I’ve seen a couple others more familiar with her songs note, Sia’s view of the world is extremely idealized. Unfortunately, this transferred over to the film in the worst possible way. By idealizing Music’s experiences, Sia failed to capture the fact that being autistic is a struggle. Sia is of the mindset that, as long as Kazu accepts Music in her life, everything will be okay. Which is not true. The marginalized struggle because people will NOT accept them. Music would NOT be loved by everyone around her. Everyone would NOT treat Music with respect and, thus, make her life ‘better’. In the real world, Music would be given strange looks on her daily walks. She’d be bullied for acting out, even by her own family.  Music would have the cops called on her and possibly face charges for her meltdowns.

Sia, who need I remind you wrote, directed, and produced this ‘film’, claims it is a love letter to autistic people and the caregivers of the disabled overall, but I can see right through her. Sia does not really care about those affected at all, only what our struggles can do for her career. A reviewer mentioned something about her which I agree with. I don’t think Sia wants people who are different to actually succeed. Sia wants to accept us in our failures and not our successes. She only sees us for what we are and not what we can be. We are merely tools for other people to feel better about themselves. We are things to be used for Oscar bait.

They say the road to hell is paved with good intentions, but not Sia’s. Hers is merely a glorified vanity project that dares to pretend it is something more. To call Sia’s ‘movie’ tone deaf barely covers just how awful it is to all parties involved. In short, Sia’s vain off-key debut is best left on mute. Forever.

Feb 11
Love0

Identity First VS People First

By Self Advocacy, Uncategorized

Disclaimer: examples of ableist language are used

Language is a very powerful tool in society. It shapes how we think about and understand our world and the people in it. As society continues to evolve, so does how we communicate, especially when it comes to how we view our fellow man—to be more specific, the disenfranchised, those viewed as lesser. For example, calling someone “an autistic” is different than saying someone “is autistic” or “has autism” which is also different from “is a person with autism” or “is afflicted with autism” or “suffering with autism”.

It seems obvious no one would ever think to refer to a person saying “she is cancerous”; they’d say “she has cancer”. Originally this stood out to me because calling someone cancerous seems to clearly be equating/identifying a person with cancer in a negative way. This term is known as person-first language. Person-first language (aka people-first language, or PFL), while an attempt to move toward humanizing people, has its own issues and is certainly not a one-size-fits-all solution. In person-first language, I am “a person with autism”. This is not, however, how I refer to myself. Despite my opinions on the term, I can understand why the person-first movement started and why it is used by medical professionals, including my colleagues. I also believe that, as self-advocates, it is important that we acknowledge this term’s significance in our movement’s history.

Before its present use today, person-first language originally started in the AIDS crisis. In 1983, a group of activists stood up at a Colorado health conference and drafted a declaration known today as the Denver Principles, which included the following statement:

We condemn attempts to label us as “victims,” a term which implies defeat, and we are only occasionally “patients,” a term which implies passivity, helplessness, and dependence upon the care of others. We are “People With AIDS.”

And so, person-first language was born in a bid to refuse to be labelled a “victim” during a harrowing medical crisis. It was insightful, brave, and RIGHT. Even better, doctors at the time took notice as more and more research papers referred to “people” instead of “victims” or “patients”. For what was shown in studies at the time, person-first language was helping change perceptions about AIDS for the better.

Early in the disability rights movement it was common for a person’s disability or medical condition to supersede a person’s identity in a very objectifying way. Older historical terms included words such as “cripple”, “invalid”, and “cretin” were all very much used in noun form to supersede any ideas of personhood. We weren’t seen as people. We were seen as imperfect. Broken. Wrong. It was “that kid with cerebral palsy, Ben”, not Ben, who has cerebral palsy. We had no personhood. We were just societal burdens with a pulse.

When you’re referred to by terms like “moron”, “retard”, “idiot”, “imbecile”, and “stupid”, it only makes sense that you’d want to be seen as a person. To see the person first and then the disability. Granted, those terms were all once specific psychological/medical terms and retain a lot of that stigma even today, even though they are often used as generic insults now. In an effort to de-objectify us and to emphasize our humanity – which unfortunately could and can still be quite prejudiced and discriminatory – person-first language was magnified as the politically correct and preferred way to address not just people with AIDS, but people with disabilities as well.

In addition, there was a shift in language in the 1990s when the federal Education for all Handicapped Children Act was renamed the Individuals with Disabilities Education Act. The federal mandated change in terminology reflected a broader deliberation for identifying language. While this change still held stigma, it was a small step in the right direction for that time. However, because of this language change, and the broader cultural shift it represented, medical professionals in the 1990s were quite skittish at using identity-first language. For them, calling someone an autistic person didn’t sound quite right.

But that jargon is not a blanket term for all disabilities. The autistic, blind, and deaf communities haven’t been as affected at the same scale as the communities with intellectual disabilities. While we are still looked at with disdain, in recent times, we haven’t been locked away en masse. My community, the autistic community, seems to be the most passionate about this and with good reason. Despite society’s progress since the 1980s, the population is still by and large reviled, abhorred, and discriminated against by society as a whole, be it consciously or unconsciously. Even pro-autism organizations and events can fall into this, causing us to be seen as an epidemic of tragedies.

A new movement within the disability community is gaining traction by the day. The growing prominence of disabled people proudly accepting their disability as one with their identity and changing the game. Those in the movement, including myself, are saying that our disability shouldn’t be an afterthought. Moreover, our disability is not a bad word. There are many hashtags such as #SayTheWord on Twitter filled with tweets of disabled people who chose identity-first language.

However, at the end of the day, it is a choice. And the community it impacts is not a monolith. Disability touches every demographic imaginable. No two individuals will be impacted in the same way. Their different perspectives and life experiences dictate how they self-identify and their place or lack thereof in the community. It would be hypocritical for one disabled person to dictate another’s identity seeing as that is what the rest of the world is doing to us.

The main rules of thumb I can give for those unsure is as follows. If you are speaking with or about a disabled individual and are unsure of that individual’s preferences, ask them. Much like the autism spectrum itself, each of us is unique and have our own likes and dislikes. One of us may not mind being referred to in PFL, but another may not think so.

Words are important, and how we use them affects others and can also shape our personal and societal outlooks. Using language responsibly is something we should all strive, and it’s impossible to do so without listening, especially to the people you’re talking about and who your words most effect. So, thank you for listening. 

Oct 08
Love0
Greta Thunberg in a wearing a parka and beanie at the Columbia Icefield in Jasper National Park.

Autism’s Unsung Heroes

By Featured

Most people generally know about autism from the 1988 movie Rain Man. However, what a lot of people don’t know is that the inspiration for Raymond Babbitt, Kim Peek, also had a rare disorder known as FG syndrome. However, this revelation does not diminish from the impact that Dustin Hoffman’s brilliant portrayal on autism as a whole. Indeed, were it not for that movie, autism itself might not be as well-known as it is today, for good or ill. There has been a plethora of unfounded fear and misinformation on autism on the Internet for a long time now. I believe that more attention should be directed towards autistic people themselves.

Temple Grandin (1947)

Temple Gradin, speaking on stage with left hand raised, index finger pointing upward.

Photo by Steve Jurvetson (cc-by-2.0)

In 1988, Temple Grandin was completing her PhD and had already made revolutionary contributions to animal science. The de facto example of successful people on the spectrum, Temple Grandin used to communicate her frustrations by screaming, peeping, and humming. When she was diagnosed at 3, it was advised that she be institutionalized. Her parents disagreed. She has since become a leading force in animal sciences, an accomplished author, and was named as one of TIME Magazine’s “100 Most Influential People.”

Dan Aykroyd (1952)

Closeup photo of Dan Aykroyd smiling.

Photo by Rnunezart (CC BY-SA 4.0)

By the time of Rain Man’s release in 1988, Dan Aykroyd was a comedic superstar, having already been in SNL, The Blues Brothers, and Ghostbusters. As a child, Aykroyd was expelled from two different schools before anyone realized that he had mild autism. Ever since coming out about his diagnosis in 2004, he’s been vocal and honest about his experiences on the spectrum. Aykroyd has had an obsession with ghosts and criminology to the point of studying it in college. According to the actor, it even helped him develop Ray Stantz during filming.

Susan Boyle (1961)

Susan Boyle singing in to mic, wearing black sequin dress.

Photo by Wasforgas (CC BY-SA 3.0)

For years, one of the best-selling Scottish contestants from Britain’s Got Talent believed that she had suffered slight brain damage after complications at birth. She was diagnosed in 2012 before going public in a BBC interview a year later. Given her struggle to control outbursts, this revelation came as a “relief” to her as she finally has a “clearer understanding” of her condition. Though she is still learning about her disability, she believes this will not make any difference to her life as a performer.

Courtney Love (1964)

Courtney Love playing guitar on stage.

Photo by Andrea Fleming (CC BY 2.0)

Yes, really. In 1989, Love was starting her early work with her alternative rock band Hole. The world famous singer/actress/widow of Nirvana frontman Kurt Cobain is on this list, and for good reason. As a child diagnosed at 9 years old, Love struggled behaviorally and academically, and had trouble making friends. While she still struggles with social skills, Love would practice social cues and casual conversations by visiting gay clubs with close friends.

Satoshi Tajiri (1965)

Photo of a young Satoshi Tajiri.The creator of the Pokémon franchise was fascinated by insects as a child to the point that he was nicknamed “Bagu hakase” (Dr. Bug) by other children. Though he confirmed that he is on the spectrum, Tajiri prefers to not talk about it in public, instead choosing to let his many, many accomplishments speak for themselves.

Pikachu may be the mascot, but Tajiri’s favorite Pokémon is actually Poliwag!

Clay Marzo (1989)

Closeup photo of Clay Marzo against a plain black background.

Photo by Adrian Araya (CC BY-NC-SA 2.0)

In school, the Hawaiian surfing prodigy had trouble sitting still, comprehending directions, or understanding what he just read. He’d flap his arms when he was anxious and rub his hands together when he was excited. When his routine was changed, especially if it kept him from the ocean, he would become moody.

Greta Thunberg (2003)

Photo by European Parliament (CC BY 2.0)

The young Swedish activist has gained popularity through her speech at the 2018 United Nations Climate Change Conference. At 11 years old, Greta was diagnosed with autism, OCD, depression, and selective mutism. Not that it has stopped her from working for the environment while still attending school. In fact, her activism, and the changes it has brought, helped her beat her depression. Greta has embraced her disability and considers it her superpower.

Greta Thunberg in a wearing a parka and beanie at the Columbia Icefield in Jasper National Park.

Photo by Mark Ferguson (CC BY-NC-SA 2.0)

How dare I not show a photo of her adorable face!

Quite a list of achievers, no? And there are still more out there. Despite what is shown in media, we are not to be feared. We also do not want to be put on a pedestal as if we are pitiful defects. We do not want to be cured of something that is part of our being since birth. All we want is to be accepted as equals.

Sep 18
Love0

Five Things to Do While Waiting for Your Child’s Evaluation

By Autism Screening

The wait for an appointment to get your child a comprehensive evaluation can be very long and discouraging. As a parent you may have heard or read that the earlier your child receives intervention the better, so now you want to get started ASAP. You may be wondering the best way to help your child while you wait. Here are some suggestions.

1. Access Public Services

All children with disabilities from birth through age 21 are able to receive services through the education system. This is available through a federal law called the Individuals with Disabilities Education Act (IDEA, 2006). This law states that all children with an identified developmental delay or disability should receive a free and appropriate education (FAPE) that includes special education and related services. These public services, offered at no cost to families, do not require that your child already have a diagnosis because public education programs have their own process to determine eligibility.

For Children Under the Age of 3

Contact SoonerStart, Oklahoma’s public early intervention program, for assistance. SoonerStart is designed to meet the needs of families with infants and toddlers with developmental delays by providing individualized, family-centered supports and resources which may include speech-language therapy, occupational therapy, or other services, at no cost to the family.

Click here to locate your county’s SoonerStart office and contact information.

For Children Age 3 and Older

Contact your local school district for an educational evaluation to determine if your child is eligible for special education services. If a child is eligible, an Individualized Education Program (IEP) is developed and services are provided at no cost to parents.

Clinical Evaluation vs. School Evaluation

Many families become confused about why their child might get a diagnosis of autism in a clinical setting, but the school says the child does not qualify for an IEP. On the other hand, some students qualify for an IEP under the educational category of autism, but do not in some cases receive a clinical diagnosis.

  • The goal of a clinical diagnosis of autism is to determine if any treatments or therapies are needed outside of school, and to make sure those treatments will be covered by insurance.
  • The goal of a school evaluation is to determine if a student qualifies for special education services.

2. Access Private Therapy Services

Contact providers who offer clinic-based therapy (speech-language, occupational, physical, or behavioral therapy services)
Your health insurance may cover speech-language and occupational therapies for communication, social, motor and sensory delays and deficits. Contact your insurance provider first to find out which services and providers are covered.

3. Promote Social Interactions with Other Children

If possible, explore enrolling your child in a Head Start program, daycare or Mother’s Day Out program to provide exposure to typical peers and promote social interactions. Another great opportunity is to access the local library for story time which includes other children around the same age singing songs and reading books. This can help your child slowly get used to being around peers without forcing interactions if they are not ready.
Reach out to your friends with children the same age and arrange play dates.

4. Play with Your Child

The best developmental activities for your toddler are the ones they experience through play!

Get down on the floor with your child and play with them, it is free, easy, and builds many skills. The benefits of play are undeniable. Line up, build, play dress up and play with whatever it is that interests your child. If your child wants to roll a car back and forth, do this with them while commenting about the car, the color and how fast a car can go.

Let’s Play Guide

Here is an activity guide for toddlers (age 12-24 months) to provide ideas on ways to engage with your child while working on important developmental skills.

Click here to download our “Let’s Play” Guide

5. Reach Out to Others

You are not alone. One of the best sources of information for learning about community resources and experiences is through networking with other parents who have children with similar needs. They often provide guidance and insights about available resources. Organizations that can help you network:

  • The Oklahoma Family Network connects parents with each other for one to one mentorship and support.
  • AutismOklahoma currently hosts eleven different groups around Oklahoma to provide a way for parents to connect with each other and their community.

While waiting to know whether or not your child is on the autism spectrum can seem like forever, there are many services and supports that you can access that will be very beneficial to your child.

 

May 05
Love1

Wanda Felty Awarded MetroFamily’s Awesome Mom

By Featured, News

For those of you who know Ms. Felty, it is no surprise that she is receiving an award. For those who might not know her, Wanda has been an important leader in the disability community advocating for people with developmental disabilities and their families. I know her best through my connection with leadership Education in Neurodevelopmental Disabilities (LEND) Program at Child Study Center, OUHSC, as we are both LEND faculty.

With all of her important work professionally, it is great to see her also recognized for being a great mom, too! Congratulations, Wanda Felty! Well deserved.

Click here to read the article and learn more about her journey.

 

Jun 01
Love1

What is Autism?

By Autism Basics

Autism Spectrum Disorder (ASD) has become incredibly prevalent. The most recent statistics released from the CDC in 2023 revealed that approximately 1 in 36 children has been identified with ASD.

An autism diagnosis is four times higher in boys than in girls, even though autism affects all socio-economic and ethnic groups equally. Although autism can be diagnosed reliably as early as age 2, most children with ASD are diagnosed after age 4.

Early intervention gives children with ASD the greatest opportunity for healthy development and other benefits during their lifetime. But, what exactly is autism?

What is Autism Spectrum Disorder?

ASD is a complex developmental disability characterized by a certain set of behaviors that affect individuals differently. People with ASD can face persistent challenges in nonverbal communication and speech, social interaction, and repetitive/ restricted behaviors. The severity of symptoms and the effects of ASD are different in each person.

Causes of ASD

There is no known cause of autism. However, scientists have determined through twin studies that autism is a condition that is genetically based. Specifically, if there is a set of identical twins, and one has ASD, then there is a 36% to 95% chance that the other twin will have the same diagnosis. The chance that siblings will both be affected by ASD ranges from 2% to 18%.

One theory that gained popularity in the late 1990s and early 2000s was that vaccines cause autism. This has been proven to be patently false, although some still stubbornly cling to these beliefs.

Symptoms of Autism

There is often nothing about how a person with ASD looks that sets them apart from anyone else, but people with this condition may communicate, behave, learn, and interact in ways that are different than others.

Everyone with ASD is different, but the characteristics of autism fall into several categories:

  • Communication and social interaction problems – including reduced sharing of emotions or interests, difficulties with conversations, challenges in dealing with social cues such as facial expressions and eye contact, and difficulty creating and maintaining relationships.
  • Repetitive and restricted patterns of interests, behaviors, or activities – including speaking in a unique way, toe-walking and hand-flapping, requiring a predictable schedule, being overwhelmed by certain stimuli, and exhibiting intense interests in certain activities.

Early Signs of Autism

Early identification and intervention are the keys to ensuring optimal outcomes for children with ASD. Some of the early signs of autism include:

  • Poor eye contact
  • Infrequent or delayed babbling
  • Infrequently seeks your attention
  • Rarely imitates expressions
  • Does not respond to their name
  • Unusual body movements
  • Delays in motor development

Early Access provides direct screening services for ASD and provides ongoing technical and promotional support to its Screening Partners.

Treatment for Autism

Autism is a lifelong condition, but many children that are diagnosed with ASD go on to live productive, independent, and fulfilling lives. The thinking, problem-solving, and learning abilities of people with ASD can range from severely challenged to gifted. Some people with this condition need a lot of help in their daily lives, while others need less.

The Early Foundations program is a model that employs evidence-based strategies to help children diagnosed with ASD. It is an age-appropriate intervention model focused on giving toddlers with autism access to resources and tools that help them participate in games and activities with their peers.

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