What is Autism?

Autism spectrum disorder (ASD) is a developmental disability caused by differences in the brain. Some people with ASD have a known difference, such as a genetic condition. Other causes are not yet known. Scientists believe there are multiple causes of ASD that act together to change the most common ways people develop. We still have much to learn about these causes and how they impact people with ASD.

There is often nothing about how people with ASD look that sets them apart from other people. They may behave, communicate, interact, and learn in ways that are different from most other people. The abilities of people with ASD can vary significantly. For example, some people with ASD may have advanced conversation skills whereas others may be nonverbal. Some people with ASD need a lot of help in their daily lives; others can work and live with little to no support

 

 Signs of Autism in Children

  • Avoids or does not keep eye contact

  • Does not respond to name by 9 months of age, or can understand name but wont respond

  • Does not show facial expressions like happy, sad, angry, and surprised by 9 months of age

  • Uses few or no gestures by 12 months of age (e.g., does not wave goodbye)

  • Does not point or look at what you point to by 18 months of age

  • Does not notice when others are hurt or sad by 24 months of age

  • Does not pretend in play, or only plays how they feel they are supposed to

  • Shows little interest in peers

  • Has trouble understanding other people’s feelings or talking about own feelings at 36 months of age or older

  • Lines up toys or other objects and gets upset when order is changed

  • Repeats words or phrases over and over (i.e., echolalia)

  • Plays with toys the same way every time

  • Is focused on parts of objects (e.g., wheels)

  • Gets upset by minor changes

  • Has obsessive interests

  • Must follow certain routines

  • Flaps hands, rocks body, or spins self in circles

  • Has unusual reactions to the way things sound, smell, taste, look, or feel

 

 Autism In Adults

  • Inability to look directly at or be looked at by people

  • Resistance to touching

  • A preference for being alone

  • Inappropriate or no facial gestures

  • Inability to start a conversation or keep one going

  • Excessive talk about a favorite subject with no regard for the reactions of others

  • Speech problems or unusual speech patterns

  • Inability to express emotions or recognize them in others

  • Trouble recognizing simple social cues

  • Difficulty following simple directions

  • Inability to predict someone’s response or reaction

  • Inappropriate social interactions

  • Inability to recognize nonverbal forms of communication

  • Performing repetitive movements, such as rocking back and forth

  • Developing routines or rituals that can’t be disrupted

  • Self-harming, including biting and head-banging

  • Repeating words and phrases

  • Becoming extremely fascinated with a particular subject matter, fact, or detail

  • Experiencing sensations of light and sound more or less powerfully than others

  • Fixating on particular objects or activities

  • Having particular food preferences or aversions to food textures

 

Accommodations and Accessibility for ASD

  • Overstimulation Protection

    With ASD, it is very easy to be quickly overwhelmed by sound, lights, smells, or anything sensory wise. Gadgets like noise cancelling headphones, sunglasses, masks and others can help with this!

  • Routine

    Sticking with a routine we are comfortable with is peak Autism trait. Many of us get very overwhelmed and disrupted when we are not sure what our day holds, so having a routine can help lessen this stressor.

  • Sensory Needs

    Often times we feel like we need something, but cannot figure out what. Often this means we need sensory input! Things to help with this are fidget toys, weighted blankets, movements, and ‘Stimming”.

  • Communication

    I have found being honest in my communication struggles has benefitted me much more than hindered me. When you are open with your struggles, people can help guide you to the correct assumption, or explain things in greater detail to us.

  • Self Care

    Self Care for someone with ASD will look different for every person! In my opinion, therapy and working with your doctor team is KEY in thriving as an adult with ASD. I am very communicative with my therapist and doctors, which makes it much easier to receive the help that I need.

Navigating Resources

 When you google Autism, you will get millions of results. Narrowing those down to ones that are genuinely helpful can take hours- and that doesn’t count weeding out the harmful ones. Unfortunately, many groups that claim to help Autistic people are actually working to actively harm our community, and are attempting to “find a cure”. These organizations perpetuate the harmful narrative that ASD is a “bad thing”, and implies that people diagnosed autistic cannot live a normal functioning life. Below I have listed some good “tells” that can help you figure out if the organization is actually listening to Autistic voices, or if they are not.

 

Infinity Sign vs. Puzzle Piece

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While there are some autistic people who may identify with the puzzle piece, a large majority of autistic people don’t. Not only was the puzzle piece symbol used without input from the autistic community, but it has been used to stigmatize and dehumanize autistic people for decades, and continues to be used in this manner today. Despite overwhelming opposition for the puzzle piece symbol by autistic people, it remains the most commonly used and recognized symbol for autism.

For more on the puzzle piece issue, visit:

https://themighty.com/2021/03/autism-puzzle-piece-problem/ 

ABA Therapy

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ABA therapy does not put the child’s emotional well-being and quality of life first. ABA therapy assumes that children simply won’t do things and need to be incentivized to do them through rewards and negative reinforcement(or, lack of rewards). The ABA therapists don’t assume that the autistic kids can’t do what they are asking them to do (do complex physical tasks, or physically speak), or that what they’re asking them to do is painful. Further, ABA therapy is not child-led, unlike most other therapies. Instead, the ABA therapist themselves and the parent decide what goals the child must meet. ABA therapy also rewards autistic children to hide their pain and distress, and rewards autistic children for “fitting in” to Neurotypical norms. Research on trauma, sensory sensitivities, and the effectiveness of ABA therapy is within this article.

https://autisticscienceperson.com/why-aba-therapy-is-harmful-to-autistic-people/

Nothing About Us, Without Us

“The autistic community doesn’t always have a voice and it’s not just because some of us are non-verbal. While there are many respectful, trustworthy autism professionals out there who believe in patient or client-led care and are doing wonderful work, the sad truth is that there are also people who choose not to listen to us. They think they know what is best for us. I’ve had conversations with doctors who, once they find out I have autism, will start addressing the person next to me, as if I am unable to comprehend the situation, now that they know I have autism. It can be very frustrating to be treated as though you have no intelligence.

The time to change the perception of what it means to have autism is now. We are at the forefront of the neurodiversity revolution. People with autism are making themselves heard. We are showing society that our neurodiversity is a positive, not a negative.”

Read More Here: https://www.milestones.org/resources/blog/2021/03/30/nothing-about-us-without-us-playing-a-part-in-the-neurodiversity-revolution

My Favorite Sites

  • Autistic Women and Nonbinary Network

    “The mission of Autistic Women & Nonbinary Network (AWN) is to provide community, support, and resources for Autistic women, girls, transfeminine and transmasculine nonbinary people, trans people of all genders, Two Spirit people, and all others of marginalized genders.

    AWN Network is dedicated to building a supportive community where we can share our experiences in an understanding, diverse and inclusive environment. AWN is committed to recognizing and celebrating diversity and the many intersectional experiences in our community.

    We welcome all women, transgender and cisgender, transfeminine and transmasculine non-binary and genderqueer people, Two-Spirit people, trans people of all genders, and all other people of marginalized genders or of no gender. AWN recognizes and affirms all people’s gender identities and expressions, as well as choices about disclosure, transition, and going stealth.

    Our goal is to dispel stereotypes and misinformation which perpetuate unnecessary fears surrounding an autism diagnosis. We seek to share information which works to build acceptance and understanding of disability. Welcome to AWN Network!”

    Go To Site

  • Autistic Self Advocacy Network

    “The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!”

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  • The Autistic Advocate

    “This website incorporates my experiences as an Autistic person and an Autism Professional but, much more importantly, it is a place of collective stories, reflecting on the barriers facing Autistic people. It addresses the negative narrative of Autism, focusing on Autism as an Identity, as an acceptable Neurology, while at the same time addressing the aspects of being Autistic that can be disabling, both by society, but as a Disability too.

    It's a resource for Autistic people, Parents and Professionals to help you understand various concepts around Autism, get practical advice and take on the highly valuable inside perspective.”

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  • The Mighty

    The Mighty is a digital health community created to empower and connect people facing health challenges and disabilities. We have over 2 million registered users and are adding a new one every 20 seconds. Our stories and videos are viewed and shared more than 90 million times a month. But those are just stats. Join the site to see thousands of stories of people who feel just like you, and share your own!

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